The Isaac Foundation News Blog

Someday We'll Find It...

2011-12-03T19:13:00.010-05:00

"Someday we'll find it, the Rainbow Connection - The Lovers, The Dreamers, and Me."

So go the lyrics to a beautiful song written to inspire hope when hope is all you have left to dream for. I grew up listening to this song and fell asleep listening to it on countless nights. It was part of Kenny Loggins' "Return To Pooh Corner" album, a mix of children's songs he put together many years ago, although the song originated elsewhere.

When my kids were babies, I spent a lot of time singing this song to them as they drifted off to sleep in my arms, some of the most precious moments I've ever had in my life, and memories I'll cherish for as long as I live.

This evening, I found myself listening to that song once again, but this time I had tears streaming down my face as I snuggled up with Isaac. We were in the movie theatre and, of all people, Kermit the Frog was singing away to "Rainbow Connection" on the big screen in front of us. Isaac was weeping because it was a sad part in the movie (he's always been an emotional soul), and I was weeping because of the news we received yesterday regarding Isaac's health.

For the past year and a half, we've been thrilled by the fact that things with Isaac have stabilized - for the first time we finally felt like the symptoms of his disease had stopped progressing - we'd halted things where they were. On Friday, all of that came crashing down on us as we got word from Isaac's cardiologist that his heart has become enlarged again. We've been through this before - Isaac's been on heart medication to stop his heart from getting enlarged for a number of years. Up until this point, the medication has worked. In fact, over the course of the past few years, his heart has shrunk down to it's normal size again. But yesterdays news was earth shattering for us. For some reason - the meds are no longer working and his heart is now 25% enlarged again, and we don't know why.

We've been told that it could be due to valve leaks - we hope this is the case. In fact, this is the best case scenario at this point and, for the time being, we've switched his heart medication to another type in an attempt to stop the heart from becoming enlarged. We hope and pray that this will work because the other reason for the enlargement is so much worse - cardiomyopathy or, essentially, the beginnings of heart disease/heart failure. Facing your own mortality is scary; facing the mortality of one you love is devastating.

For the first time in a long time, I'm scared again - devastated - and I feel like I have the weight of the world on my shoulders. And I feel helpless. Helpless because I don't know what I can do to make this better for Isaac; I don't know how to save my little boy.

For now, we're going to redouble our efforts with The Isaac Foundation and work as hard as we ever have in order to find a cure for Isaac. Our research project that we're currently funding has been shown to get into the hearts of those effected - could this be the hope we need? Is there another project ready to be started that can help Isaac's heart? All we have are these questions, but it's a place to start.

It may not help but please take a moment to send this blog on to anyone you know - you never know who's reading and can help out. You never know what might be. I've always been a dreamer - maybe this entry will find it's way to a million people. And maybe each person will find it in them to send our Charity 1 dollar. Research projects cost a lot of money, and maybe that money is all that stands in the way of us saving our little Isaac. It seems like a big dream, but it's all I've got right now.

If you can't send this along, please take a moment to keep Isaac in your thoughts. The support we get from around the world has been, and continues to be helpful, and we could use the extra thoughts right now.

I'll update when I know more - hopefully with good news. For now, back to the grind raising money and awareness about this devastating disease; back to finding a cure for our son. Someday we'll find it - the Lovers, The Dreamers, and Me.

With Love,

The Heart of Life

2011-08-25T12:43:00.003-04:00

Hi All,

Isaac's First Concert Performance. I thought I'd share with all of our supporters so that you can see the Hope and joy he brings to us each and every day.

Enjoy, with Love,

The Isaac Foundation

How To Save A Life - Don't "Wait On The World To Change"

2011-08-18T10:38:00.009-04:00

Hi Everyone,

As a educator, I often look for ways to help our children become empathetic, caring, and compassionate individuals. When kids leave my classroom, I want them to strive to make the world a betterplace; I want them to understand that they CAN make a difference in the greater world around them. I want them to knowthe importance of helping others.

There are many ways that teachers help guide their students along thepath to caring - books, news articles, projects, and fundraising activities all come to mind as examples I see in schools across this country. All of these activities are well and good in the classroom, but none if it matters if we don't stand in front of our children and lead by example. None of it matters if our students don't see us practicing what we're preaching. To me, taking a moment to fight to save the life of Jasper More (pictured left) shouldbe on top of everyone's list of "To Do's" today as we seek to set that example for our kids.

2 1/2 year old Jasper More was recently diagnosed with an ultra-rare enzyme deficiency called MPS VI. Essentially, Jasper lacks an enzyme in his blood responsible for breaking down cellular waste in his body. This waste then builds up and stores in his bones, tissues, organs, and muscles. Progressively, this disease devastates the body. Internal organsbegin to swell, joints begin to stiffen, and heart and airway disease begin to take over. Along with a host of other catestrophic symptoms this disease leads to a shortened stature and a severely shortened life span.
My wife and I were sick with fear - I lost 40 pounds in a few weeks, and we were devastated that the future for our little boy was forever changed. At that time, Hope seemed lost.

When a child is diagnosed with this disease - and there are only 8 cases in Canada - the news is devastating. I know this because my son, Isaac (right), was diagnosed in 2006 at the age of 18 months. At that time, we were told that our beautiful little boy may not reach his teens and that the years leading up to those teenage years would be filled with painful surgeries and horrific symptoms.

However, we soon learned that Hope wasn't lost. A treatment for this disease was available, albeit not in Canada. The treatment consists of a weekly infusion of a synthetic version of the enzyme that children affected with MPS VI lack. Studies have shown that this treatment dramatically slows the progress of the disease, if not halt it altogether. It's not a cure, but it is certainly a lifeboat for our children until a cure can be found. Because we lack an Orphan Drug Policy here in Canada, we had to apply to have this treatment brought to Canada using the Federal Government's Special Access Program (SAP). We were quickly granted the right to bring the treatment (ERT) to Canada - contingent on the province funding the administration of it to our Isaac. And herein lies the problem - treatment costs for a small child can start around $300,000 annually and escalate to $1,000,000 for a young teenager.

Through our heartfelt lobbying of the Ontario Liberal Government, assisted by the tireless advocacy of MPP Elizabeth Witmer, we were successful in securing funding for Isaac. Today, because of his treatment, Isaac is a happy 7-year old boy who loves to read, play with his toys, and spend time with his best friend, his younger brother Gabriel.

The battle for Isaac's life was won, a battle that should never have taken place in the first place. With the success of Isaac's fight, and the obvious benefits to the treatment that the government was now funding, it should have been easy for Jasper's family to get a quick approval for the same treatment. After all, our Health Care System is designed to provide Equal Access to All - we're set up to ensure the best care for all Ontarian's regardless of age, gender, religious beliefs - regardless of anything. To bolster the case for providing treatment, ERT is already approved in the United States, the European Union, Australia, and other developed countries! In fact, treating MPS VI with ERT is

the standard of care in these countries.

But on Monday, Jasper's family got the heartbreaking news that the Government had denied funding for the Life-Sustaining treatment that Jasper needs - the exact same treatment they are currently funding for Isaac. Jasper's parents, and our family, were stunned by the news. How can we allow this disease to ravage Jasper when we know we can stop it?

Thus began our battle anew, and we've had to cross our government officials again in order to advocate for the life of a little boy. As a member of the federal Liberal Party, and as an aspiring Politician, I've put myself in the line of fire amongst members of my own party. After all, it isn't every day that a die-hard Liberal has to battle his own party in order to enact change. But if I didn't work hard on this file, I truly believe I would be doing a disservice to the students I teach each and every day, and I believe I'd be letting my own children down. During my campaign a few years ago, I talked at length about preserving our Social Safety Net - standing up for those in need, protecting the most vulnerable in our society, and fighting for what I believe in. Doing the right thing is never easy, and working to save Jasper's life is the right thing. Whatever the cost professionally, this is a step I need to take in order to ensure that Jasper gets the same opportunity that my son has had.

But we need your help; we can't do this alone. Taking 2 minutes out of your day (every day) can and will go a long way to saving Jasper. It will also go a long way to ensuring that our Health Care System truly does provide Equal Access To All - you never know when you will require the services supposedly afforded to all Canadians. By calling Deb Matthews, our Minister of Health, directly, you can allow her to understand how important providing proven Life-Sustaining treatment is to the people of Ontario. Sending an email to her office and cc'ing Premier Dalton McGuinty will do the same. Typing out a tweet to their accounts allows word to spread and momentum to pick up in support of Jasper, and commenting on online news articles allows our politicians to realize that this matters to the public. As well, sharing Jasper's stories on your Facebook and Google+ feeds allows others to participate and make a difference.

And we CAN make a difference. Holding our elected officials to account only takes a few minutes a day. And those few minutes will save the life of Jasper More.

Ironically, as I type away at this blog, my son Isaac and his brother Gabriel are listening to their friend and hero, John Mayer, and singing away to his anthem "Waiting on the World To Change". Watching him dance around and sing to his heart's content, I know that we can't just sit around and "Wait for the World to Change" - we have to take action NOW and do it ourselves. Please take the time to help this change by connecting every day with friends and family about this file. And contact (everyday!) the numbers and twitter accounts below. Together, we can make a difference.

I'll sign off this overly long (sorry!) blog update by explaining our Foundation Slogan. We chose "Love, Laughter, and Hope" because our son gives us the first two each and every day. But sometimes, all you have left is Hope. Jasper and his Family need all the hope they can get these days, and I'll thank you in advance for providing that.

With Love, as always,

The Isaac Foundation

Christmas at Sick Kids' 2010

2010-12-23T13:49:00.003-05:00

Hey Everyone,

Well, another year has past and once again I find myself sitting here at Sick Kids' Hospital with Isaac, waiting for the time to tick by and for treatment to end so that we can race home to be with our family and start our Christmas Celebration.

We've spent the passed 5 years here, always coming on a weekly basis but sometimes finding ourselves here a few times a week during certain months. This means that we're always here close to Christmas - if not on Christmas Eve then definitely the day before. I'm always amazed at how calm the hospital seems during these times, the hustle and bustle of most weeks is gone. I guess only those that truly need to be at the hospital are here today, and staff have begun their holidays and are at home with their loved ones.

It's quiet again this year. But it's a good quiet and, truth be told, I love this time each year. As I type this long awaited blog update, I am sitting on the 4th floor of the hospital, a place that has been our home away from home since Isaac's diagnosis. Below me in the atrium, a musician is playing some acoustic Christmas carols for the people that find themselves here today. The soft music of his guitar adds to the already calm atmosphere here today, as his voice echoes throughout the half-empty hallways and through the rooms filled with sick kids. A therapeutic clown is dancing along to the music, and a few of the kids here today are dancing and playing with her. It's a beautiful sight to see.

I say I like this time here each year because it gives me the perfect time to put things into perspective and reflect on the past year. 2010 has been a wonderful year for our family. We've been fortunate to have Isaac is excellent health - probably the healthiest that he's been since this journey began 5 long years ago. In September, we increased his treatment dosage with hopes of seeing an improvement in his growth. So far, the increase seems to have been successful and he's growing a bit more each week - always good news when you are dealing with the disease we are dealing with. His shoulder joints seem to be showing some improvement, and his physiotherapist has been happy with the progress he is making with his fingers. And we haven't had any emergencies this year, thank God. A good year health wise, and I'm thankful to be sitting here typing that news.

The Isaac Foundation was fortunate to be able to give out another grant this year - renewing Dr. Hopwood's project for another year. Details on the project and the Lay-Person Summary can be found on the RESEARCH tab on our website. There is also promising news coming from the other project we funded over the past three years - news we hope to share in the coming months that will be beneficial to Isaac and others affected with MPS diseases worldwide. Money raised from our fundraising events and private donations to The Isaac Foundation went directly to supporting these research projects and we would like to thank everyone that donated to our cause this year. Your help does make a difference - we see it every day in Isaac and we feel it each and every moment with the hope your donations provide our family.

This year, we again participated in the RUN FOR ISAAC! event and organized our Golf Tournament. In addition, we hosted our first annual Gala for a Cure - a wonderful evening that included wine tasting, live music from Juno Award Winner Ron Sexsmith, dinner, and a silent auction. We presented our friend, Elizabeth Witmer, a Conservative MPP from Kitchener-Waterloo, with the first "Lifetime Impact Award" for her incredible contribution to the quality of life of Isaac. She was instrumental in securing treatment for Isaac. I continue to say that he wouldn't be here today if it weren't for the support of Elizabeth. She's an incredible Mom, Politician, and Friend and we were grateful to present the award to her during the Gala. We were thrilled with the success of the Gala and look forward to hosting it again next year - we hope to see many of you there again and, if you couldn't come this time, hope you can make it to our next one.

Isaac was fortunate to spend some time with two of his Hero's (and self described "Best Friends") - John Mayer and Roy Halladay. Mayer spent some time with Isaac in February at his show in Toronto and again in August when he came back around on tour. John even spent a long time on stage talking to the crowd about Isaac and the small impact he had on John while they were hanging out before the show. It was a nice touch for John to mention him to his fans and nice for him to acknowledge that Isaac means a lot to him. In June, Isaac and Gabriel headed down to Philadelphia to watch their baseball hero play against the Blue Jays. Roy's wife Brandy very kindly organized an on-field visit for the boys and they got to see Roy before the game started.

While brief, these visits with John and Roy will be the memories that I will remember most from 2010. The look on Isaac's face when he saw Halladay walking towards him from the outfield is something that I won't ever forget - the beaming smile that flashed across his face and the look of wonder that he had as his "best friend" walked toward he and his brother makes me smile even still. I'll cherish the memory of Isaac and Gabriel pitching the ball to Roy, who was perched 10 feet away in the catcher's position, waiting patiently for the boys to try to reach the ball to his glove. Isaac told Roy that he was a better pitcher then him - something Roy just smiled at. Halladay would later go on to throw a rare Perfect Game AND throw a no-hitter in his first ever playoff appearance. I think Isaac's got his work cut out for him before he's the better pitcher!

And the kind words and shared warmth between John and Isaac during his visits are always moments that we will cherish. As I've written before, Isaac has true love for John - He loves the moments they share before concerts - the laughs and hugs - and February and August were no different this year. In February, Isaac made John a cute Valentine and gave it to him before the show. I guess it came during a difficult period for John, and it seemed to have had a bit of an impact on him. With all the controversy that was swirling around John during that time, I think his time with Isaac put a few things into perspective for him. Isaac gave him the Valentine and told him that when he saw the card on the stage, he'd know that John was thinking of him. And that's all he wanted - all he's ever wanted, from John - to be thought of from time to time by someone he looks up to and calls his friend. To me, that moment gave John a moment of pause - of reflection - and he indeed thought of Isaac while he was on the stage. And he has ever since - tweeting a photo of Isaac after his show in August being just one example.

Our son and our family are incredibly indebted to John, Roy, and Brandy for their kindness and warmth. Unbeknownst to them, we feel a great sense of hope when we are around them - hope for a future for our son, hope for a breakthrough in our research, hope for a change in the course of this journey we are on. Their support, and their belief in our son and his strength, makes us feel that things are going to be OK.

Five Christmas' at Sick Kids' has seen many highs and lows for us. This hospital has brought us inexplicable pain and sorrow - but it's also brought us warm memories of time spent together, and built a family bond that only strengthens with each visit, and this one is no different. As the music fades below me and the hospital begins to empty out, I guess it's time to sign off for 2010. I'll end by thanking each and every one of you for your tremendous words of encouragement, your support, and your donations. It's hard to keep the support for an organization strong over the years, but you all make it very easy. Each year, we feel our support network grows by leaps and bounds, and we couldn't thank you more. We hope you'll stay with us over the coming years - helping to spread our story, continuing to provide words of encouragement for our son, and participating in our search for a cure for Isaac. We can't do it without you, and I'm thankful knowing we don't have to.

Warm Wishes for this Holiday Season and for a Healthy 2010, from our family to yours.

With Love,

Andrew, Ellen, Isaac, and Gabriel

Justin

2010-08-27T05:38:00.002-04:00

Sometimes life can be serendipitous. Case in point - MPS VI is so rare that only 4 or 5 known cases exist in all of Canada, a country of 35 million people. This week, I received an email from Justin Van Herrewegen, pictured above with Isaac at the Tim Horton's this evening, a 29 year old MPS VI sufferer who lives only an hour away from us.

Justin was first diagnosed with MPS VI when he was two years old - a time when there was little or no research being done on rare diseases and the outlook didn't look promising for those affected with this disorder. And while Justin was told he had a "mild" form of the disease (Isaac, apparently, has an advanced form), his experiences with MPS have been anything but.

Since age two, Justin has had numerous surgeries that stem from the effects that MPS has had on his body, including double hip replacements, heart surgery, and spinal cord surgery. He has lost hearing in one ear and, most recently, has had a tracheotomy that has resulted in him losing his ability to speak.

Justin contacted us this week because he was recently turned down for funding of the life sustaining treatment (Enzyme Replacement Therapy) that he requires by the Province of Ontario, and he didn't know where to turn for help. We went through the same battle for Isaac 4 years ago, and we are happy to help Justin fight today.

The government's rationale for turning Justin down for treatment is presented in a flawed argument - an argument that should be looked at closer and reversed in order to provide Justin with the Health Care he desperately needs in order to stave off, or at least slow down, the progression of his disease. The province contends, wrongly, that they refused funding for Justin based on "the very minimal available data on the natural history of MPS VI upon which to model potential treatment benefits." In addition, Justin's very impersonal letter of rejection from the Province continues that "there is currently a lack of data to clinical benefit to slowing and/or stopping disease progression with Naglazyme treatment of MPS VI at this time."

Clearly the Government of Ontario didn't take the time to note that MPS is a rare disease and, as such, minimal available data is all that exisits now, or will ever exist in the future. Data is hard to come by, considering there are only 4 other people in the country affected by the disease. However, this hasn't stopped Ontario from funding Isaac's treatment, and it hasn't stopped the BC government from funding treatment for one of their children. In addition, it hasn't stopped the Quebec government from providing the necessary and life sustaining treatment to their two affected treatment. In fact, it hasn't stopped numerous countries around the world from providing the necessary health care to their citizens affected with this disease, regardless of how minimal the "available data" is.

The fact of the matter is plain and simple - strong evidence exists within this province (through Isaac's experiences) and throughout the world, to show that the treatment being rejected by the government DOES slow the progression of the disease in most individuals. In addition, by slowing the ravages of the disease, ERT enhances the quality of life experienced by sufferers.

Enzyme Replacement Therapy isn't a cure - it's a lifeboat - but it's a lifeboat that Justin deserves to be on, just like the rest of us that are waiting until the day we're rescued from this incredible journey. Treatment has saved Isaac's life - it's increased his quality of life, and we're forever indebted to the Ontario government for providing funding for our son. We now call on the province to do the same for Justin.

Truth be told, seeing Justin today reminded me that we are still in the war of our lives, and while we seem to be winning the battle, we still have a long way to go. And it scared me a bit too, which, I guess, is why I'm up in the middle of the night updating our blog.

We'll keep you posted on our progress. If you can, please help by reblogging and commenting on this post because, in politics, there is always strength in numbers.

Thanks again...with Love,

A.

2010-08-20T15:01:00.002-04:00

This is my son, Gabriel. Four years old, and full of energy, Gabriel has been Isaac’s best friend and constant companion during the long journey our family has be on since Isaac’s diagnosis. I wanted to write a quick post about him today because he often gets pushed aside when we are at Isaac Foundation events and, at times, it’s tough to see.

When Isaac was diagnosed, we were told that 1 in 4 of our children would suffer from the same disease. Trouble was, we were already 7 months pregnant with Gabe when we got this news. After two tense months of waiting and hoping, we got the news that Gabriel was healthy and didn’t suffer from MPS VI.

By nature, Gabriel has never wanted to be front and centre whenever people are around. When the boys are giving their daily concerts in the living room, Gabe never wants to be John Mayer - he’s more then happy to be Steve Jordan (or, at times, Pino Pallidino). But, truth be told, it’s Gabriel - not Isaac - that wants to be a Rock Star and follow in his hero’s footsteps. Isaac, on the other hand, wants to be a DJ and we’ve spent countless afternoons listening to the boys plan their future collaborations together.

In public, Gabriel is shy and reserved, often using Isaac as his official spokesperson. But if we’ve learned anything through the experiences that we’ve had together as a family, it’s that Gabriel takes everything in - he sees, hears, and feels exactly like the rest of us. During our visits with John Mayer and Roy Halladay, Gabriel doesn’t feel much like speaking. Last week, he did summon the courage to give John a big hug, which was a big step for our shy boy! However, when we get back in the car, he can’t stop talking about how excited he was and wondering “when we’ll get to see John Mayer again!”

At Isaac’s school, where they constantly run fundraisers in support of The Isaac Foundation and our search for a cure, the kids always walk by Isaac with a high-five, a “Hi Isaac!”, or drop over for a hug. Often times, Gabriel gets left behind and I struggle with how to handle things. But Gabe is resilient, and it doesn’t seem to bother him. I think this quality in Gabriel, wanting the best for his brother but not wanting anything for himself, is what endears me to him and his personality that much more. I think it’s ME that struggles most when I see him being ignored, and I think I just have to learn to adapt to it.

Though quiet, Gabriel has been the perfect friend for Isaac during some difficult times. They spend each week at the hospital together, often snuggled up in the hospital chair as Isaac receives his enzyme infusion. They share a bed in their “big boy room”, and one of my greatest joys is listening to them as they lay in bed and chat until they are tired enough to fall asleep. I hear the sweetest things they say to each other and, listening to them late into the evening, I just know everything will be OK in our lives because we all have each other.

Thanks again for your support,

Best,

A.

2010-08-20T14:59:00.000-04:00

Questions

2010-08-18T20:21:00.009-04:00

"Does this mean I'll get away from having MPS VI now?"

This is the question that Isaac posed to Ellen before dinner tonight. We had just received a call from Dr. John Hopwood, one of the leading researchers on the planet in regards to lysosomal storage disorders. Dr. Hopwood was calling to discuss some of the findings in his latest research project, a project partially funded by The Isaac Foundation, and Ellen was explaining some of the exciting news with Isaac when he asked the question.

This has been happening more and more lately, and it's been very difficult for me to try and answer. Not because I don't have an answer for him, and not because I don't have hope, but it's difficult because I know how very much Isaac is thinking about his disease, and I can see how he is struggling to understand how and why he is different then the other kids around him. He wants be the same height as his brother, and he wants to be able to climb to the top of the climbers without having to have mom or dad there to spot him. And he wants to not have to go to the hospital anymore. But mostly he just doesn't want to have MPS VI, and it breaks my heart to see him struggle.

Thankfully, Ellen is handling things well - she's a pro, really, and I envy her strength as she calmly discusses Isaac's disease with him and as she patiently shows him that MPS simply makes him that much more special. And then he'll smile and say "you're right!" and the struggle is done until next time.

I can't wait for the day when Isaac asks that same question and we can emphatically say "Yes!" What a wonderful celebration it will be.

The photo above was shot by John Mayer last week during our stop-in to say hello. Was too cute not to post, and I don't think he'll mind.

Thanks again for your support. You can't imagine how much we appreciate it.

With Love,

Celebrity, Media, and The Truth

2010-08-12T12:44:00.013-04:00

Celebrity is a curious thing. You work hard at what you do, people fall in love with you, your product, and the image you created, and you're on top of the world. Next, those same people that helped you make it big, with the help of the "media", start the process of tearing you down. Piece by piece they work their own craft, finding and distorting the small flaws in you that are (or should be) inherent in all of us, until they're satisfied that you can be judged by the public on the basis of rumour, innuendo, and lies, and not by hard work you put into your craft, the changes you effect in the world around you, or the impact you make on those less fortunate than yourself. Such is the case of John Mayer, and it's a shame that the media refuse to promote him for the kind-hearted soul that he is.

I logged online this morning and caught an article by Craig Outhier in the Phoenix New Times that calls Mayer the "douchiest douche of all time", "dismissible", and "uncharitable". Furthermore, Outhier goes on to suggest that the now infamous playboy interview that John did in February was simply a way for Mayer to further his career and spark interest in himself and pad the number of followers he has on his twitter page - a naive and foolhardy suggestion at best, and an outright lie, mischaracterization, and devious attempt to attract his own attention at worst. Regardless, Outhier's "article" in today's Times seems to accurately reflect the mission of most "media" outlets in today's age - build up, pile on, take down, and move on.

Outhier, and the other "journalists" that troll through celebrities lives and fixate themselves on the flaws of people like Mayer, force themselves to look past the good they do with their time and the impact they have on others, in order to sell print and make money. It's cowardly journalism at it's finest, and I'd like to believe that writers like Outhier didn't begin their career believing they would be doing their profession proud by publishing such biased and embellished trash and calling it news.

John Mayer is a favourite for news-outlet fodder, a favourite for biased bloggers to target and tear-down. Conveniently, however, these outlets leave out honest deeds that Mayer does whenever they write their tripe, and the decision makers that OK the publication of such drivel should be shamed because good writers don't overlook the truth before them, and good writers present the whole story.

For me, the whole story on John Mayer, his life, and his career should include the past 10 years he's spent honing his craft in the music business, crossing genre's and creating a unique style of sound that will last for generations. For me, the whole story on Mayer should include the countless children (like my son) that he has spared time for in order to make their world a better place, if even just for a moment. It should include the high-fives, the hugs, the smiles, and the words of encouragement he's given to those in need of the simple things in life. It should include all that he does for others, even if he doesn't go out of his way to broadcast it himself.

The John Mayer I know isn't a "douche". He's kind and caring, and sincere. The John Mayer I know was mortified and hurt at the interview that was published in February and would NEVER seek to further himself through other people's hurt. The John Mayer I know takes pride in helping others, and goes out of his way to make my son smile. As I type this entry, I'm listening to Isaac ask his mom why he has to have MPS VI, and it's breaking my heart. Of late, he's been struggling to understand why he drew this difficult lot in life, and I sometimes don't know what to tell him. But in the same breath, he's been able to find some small comfort in his unfair disease because of the love and care he's found in people like John Mayer. John's not "dismissible" or "uncharitable" by any standards, and the proof is in my son's smile.

If there's hope for the profession and for journalistic integrity, I challenge Outhier and those like him to put aside their bias and write a real, balanced story on Mayer. Salvage your integrity and do what you trained to do, which is write the truth, because to me, knowing what I know of John Mayer, you've done everything but.

P.S. I snapped the photo to the left this morning while Isaac was at the hospital. Instead of dragging his IV pole into the playroom, he chose to lay in his chair and listen to his hero on the iPad, a lasting glow from his time at the show last night.

P.S.S There's also a photo of John signing a guitar for our charity to auction off at our upcoming Gala, co-signed by Isaac himself.

Take Care and, as always, Thanks for your support.

Perspective

2010-07-21T19:16:00.010-04:00

Hi Everyone,

Thought I would take a moment to update our blog. I know I've been neglecting to update things, but I never seem to find the time - or the right time, I guess, to write a few words.

I've been home for the summer with the kids and we've been having an incredible time. I didn't get the chance to do that last year; I was on the campaign trail most days. Essentially, I was out the door early, in late, and in bed even later. While it was an experience I won't soon forget, and I do feel like I still have a passion for public office, I think my election campaign got me away from a lot of things that are truly important in my life.

Going into the campaign, I was advised to step down from my position at The Isaac Foundation. Politics can be a nasty business, as any casual observer must know, and my team felt that it would be best to leave The Isaac Foundation in order to ensure that the organization was safe from attack from those around us. However, I didn't realize that stepping away meant keeping the accomplishments we made over the course of the last few years quiet, and I didn't realize that we couldn't celebrate and share the lessons we learned along our long journey with Isaac with my audiences. I didn't realize that by removing The Isaac Foundation from my life for the time being, I was taking away the real reason I wanted to run for public office in the first place - an intense desire to advocate and represent those in need, thereby making our community a better place for all.

Now, a year later, I regret that I didn't share my experiences advocating for my son with those around me. I regret that I didn't pass on the lessons I learned along the way, and I regret that I pushed aside a large part of who I am due to the mistaken belief that it was dangerous to do so.

Most of all, I regret that I lost site of the things that are important to me.

I regained some of my perspective on life last night when I learned that there is another person in Ontario that is suffering from the same disease that Isaac is battling. We have known about this young man for a while and knew that he was applying to the Ontario Government to have his treatment funded, much in the same way that it funds Isaac's treatment. I had expected the funding to come through for him and for his treatment to begin soon enough, but I learned last night that his application for funding was turned down by the government, a fact that clearly caught me off guard.

I am troubled by this decision by our government for a number of reasons, not the least of which is that our provincial and national health care systems are supposed to work for ALL Canadians. This young man needs treatment and I find it appalling that a treatment that is funded for Isaac would be denied for someone else. More importantly for our family, this latest piece of news leads me to believe that it isn't out of the realm of possibility that funding for Isaac might be taken away at some point as well - something that I can't and will not allow to happen.

In an instant, all that we have worked for and all the difficult moments we went through came crashing back to me and I was afraid again. Afraid for Isaac and his future, afraid that battles won long ago might come back and put us into fighting mode all over again, and afraid that we have grown too comfortable over the past while and that we forgot what we're truly facing.

Perspective is a sneak, and it comes at you when you least expect it. But I'm glad it found me last night and gave me the chance to take stock of what's important to me in my life. I'm glad it gave me pause to remember to enjoy everything we have now to the fullest, because we never know what lies ahead.

If and when I return to the political scene, I'm going to do it differently and ensure the lessons I've learned along the way can be shared with those around me. For now, though, I'm going to take all the good that this summer with my kids has to offer, and enjoy each and every moment.

I plan on contacting the family of the young man that was denied treatment this week and, if they need me, I will ensure I work hard to push their case forward with the government and ensure his treatment is funded. I'll keep things updated as I know more.

Anyway, should sign off for today. Below is how we spent our day today - Isaac and Gabriel put on a full John Mayer concert for me. Can't wait to see what tomorrow brings!

Thanks for your continued support. I promise to write more, even if there's nobody out there reading!

Brandy and Roy Halladay - Thank You

2010-06-26T22:59:00.009-04:00

Hi Everyone,

I'm truly sorry that it has taken so long to update - things have been busy with our golf tournament and our RUN FOR ISAAC! event at the Ottawa Race weekend. To add to all of that, we are planning our 1st Annual Isaac Foundation Gala for October 1st. To say the least, time has been short for updates.

However, I thought I would take a moment to write a few words about Roy and Brandy Halladay, two incredible people that took the time today to give Isaac and Gabriel a special day at the ball park.

Roy Halladay is, arguably, the best pitcher in Major League Baseball today. He has achieved almost everything that a professional baseball player could hope for, including pitching a very rare perfect game last month. However, it's not his skill and stamina on the playing field that makes Roy Halladay a special person; it's what he does off the field.

During his 12 years in Toronto, Roy and his wonderful wife Brandy created a special box at the ball park called Doc's box, which they used to host children from the Hospital for Sick Children on a regular basis. They would take the time to ensure all the kids were

comfortable - Brandy would sit and watch the game with the kids and Roy would arrive before the game, sign baseball hats, balls, and pose for photos with the children. It was at Doc's box that Isaac met Roy and Brandy for the first time. Brandy spent a lot of time with us and, I believe, fell in love with Isaac.

The following year, Roy decided to donate his Toronto Sportsman of the year award to The Isaac Foundation and Brandy organized a special on-field presentation to our organization. The Blue Jays showed our DVD on the big screen at the game and Isaac got to throw out the first pitch. More importantly, the boys got to see Roy and Brandy again. Since our visit to Doc's box, Isaac and Gabriel spent a lot of their time watching Roy "Holiday" pitch on television. They were thrilled to connect with Roy again!

Now that Roy is pitching for the Philadelphia Phillies, the boys have to listen to him pitch on the radio. However, Brandy was able to organize another special visit for Isaac and Gabriel, this time in Philadelphia. We travelled the long 8 hour trip yesterday and took in the game today. Isaac made Roy and Brandy a nice picture, and our Foundation made two special baseball jersey's for the Halladay's as a gesture of our gratitude for all they do for our son and the awareness they bring to his

disease and our Foundation.

Isaac and Gabriel waited on the field before the game

during batting practice. The entire time, they kept looking around for Roy as he shagged fly balls in the outfield. Finally, Isaac spotted

Roy coming toward him. He waited, and when Roy saw Isaac a huge smile came across his face. Isaac went running over and gave Roy a hug. From there, Isaac,

Gabriel, and Roy spent some special time together chatting and having fun. At the end, Roy let both Isaac and Gabriel pitch to him (it was something the boys REALLY wanted to do before they left). All in all, it was another special moment for our kids and I couldn't be more thankful to the Halladay's for making it happen.

The Halladay's are the essence of classiness and they truly personify what celebrities should be. They go out of their way, out of true love, to help those in their community that are struggling

and they work to make brighter days for those in need. They are kind, caring, and considerate human beings and they use their privileged position in life to make the world a better place. On the field, Roy goes about his

career and sets an example for others to follow by his hard work, determination, and sportsmanship. He's not in the media for his tantrums, his drug use, or his off field problems, much like many of the players you hear talked about in the Majors. Off the field, it is my hope that baseball fans in Philadelphia realize the real treasure they have in the Halladay family and appreciate and celebrate them in the fashion they deserve.

I know that Roy will produce on the field for the Phillies for many years to come; I hope he will even bring them another World Championship trophy, a Cy Young award, and more perfect games. But, at some point, the contributions that Roy will make on the field will come to an end, and he will immediately be remembered as one of the best pitchers in Major League History.

Long after baseball is over, Roy Halladay's legacy will live on in those he has connected with off the field. The kids that he has made smile, the families he has helped get through difficult times, and the ones he has inspired, Isaac included, will all be better people because of the difference he has made in their lives.

Thank you, Roy and Brandy Halladay, for taking the time once again to create a special memory for my kids. We appreciate your generosity and kindness, your care and compassion, and your genuine ability to make this world brighter for those around you.

Your kindness will never be forgotten.

With Love,

The Heart of Life

2010-02-15T08:39:00.000-05:00

Hey Folks,

We just got home from a fabulous family weekend away in Toronto. The Ontario government sure got it right by giving us a Fa

mily Day Long Weekend in the middle of February! We had fun with the boys, heading to the Ontario Science Centre, eating out for dinner, swimming, sleeping in a hotel, and just having some dedicated time together.

The highlight, by far, was our trip to the John Mayer Show at the Air Canada Centre. As many of you know, Isaac has been a John Mayer fan since his very early days and we have been fortunate to have John treat him to a few shows and stay in contact since their first meeting two years ago.

Isaac was excited about the opportunity to say hello again. He spent some time making him a Valentine during the week and was looking forward to taking in the show and seeing his hero on stage once again. And we were excited, too. However, nothing could have prepared us for what was to come on Sunday in Toronto.

The initial plan was for Isaac to join John for his soundcheck so that Isaac and John could sing “Half of My Heart” together on stage. But things had to change this week - apparently John was embroiled in some sort of media storm ;) On Saturday night, we got word that John could see Isaac back stage so the two could reconnect, so we headed to the show with a thank-you gift bag for John and his wonderful manager, Ken Hellie. Isaac wanted to give John a music CD/DVD of one of his other favourite singers, Canadian Danny Michel, an Isaac Foundation hoodie, and, of course, the Valentine that he and Gabriel worked so hard on during the week.

Backstage, John was just as wonderful as he was during previous visits, taking a lot of his time to answer Isaac’s questions and be a genuinely good friend to our son. Isaac began by trying to show John the picture he drew for him on my iPhone while we waited in line, a picture of a dark, starry night and a pink planet with a ring around it. It somehow got erased as we approached, but Isaac took the opportunity to show John his (my!) phone and play around on it for a while. Next, Isaac had a few questions that he wanted to ask - questions that he has been storing up since the last time he had the opportunity to see Mayer. His first question was “how do you remember all the words to the songs?” John gave him a lengthy answer about having things written down, which seemed to please Isaac.

The next question was something that Isaac has been wondering about for a long time - mostly because he is always giving music concerts here at home with Gabriel. He wanted to know what John Mayer would do if he needed to cough during a song. John laughed and told him that he would simply go “off-mike” during some music. After explaining what “off-mike” meant, he then started to have fun with Isaac and told him that the hardest thing was trying not to burp during a song. He told him that sometimes he might have a burp on the way and he would get afraid that if he sung a high note or that if he sang a certain way that the burp would come out. Isaac thought this through for a little bit and then exclaimed “why don’t you just delay your concert until you have finished your burp?!” We all broke out in laughter and John was literally on the floor laughing at Isaac’s simple cure to John’s predicament! To follow up, Isaac stepped back, put his hands on his head (his common “thinkers” pose) and finally said “I think you could just burp into the microphone tonight!” - A truly precious moment.

John had to get warmed up for the show, so Isaac’s time with Mayer was coming to an end. Isaac gave him his present and the two posed for a picture together. Mayer told Isaac that he was going to keep his Valentine with him, which brought a smile to Isaac’s face. From there, John and I had a chance to speak together about Isaac and our other son Gabriel. We also talked about the previous week - a conversation that I wish to keep to myself. I truly respect the man and feel that personal conversations should remain just that - personal.

We headed back down the hall and to our seats. Suddenly, Isaac went running back down the hall and calling to John. Mayer came back and Isaac said “I’ll know you’re thinking about me when I see our heart on the stage.” For a moment, John and Isaac just stood smiling at each other, an image that will last with me forever. Whether it was another moment of perspective for John, or simply a sweet moment shared between two people, watching the two together brought me incredible joy and feelings of immense love.

At the show, our seats were great - side stage and very close. Isaac and Gabriel put their ear plugs in and got ready to dance and sing to their favourite songs! And Mayer didn’t disappoint! All the boys’ favourite songs were played, including what Isaac and Gabriel say is “the loudest song of the concert” - Heartbreak Warfare. John gave a great show and interacted with the crowd most of the night. At mid-show, John took out his Valentine heart from Isaac and showed it to the crowd. Isaac beamed with excitement! And it wasn’t because 14,000 people were seeing the card that he made for John. It wasn’t because Mayer was speaking about him during his concert. It wasn’t even because he had people looking back at him as John told his fans about his pal. Isaac beamed because his friend and hero brought his Valentine onto the stage, something he promised to do. Isaac beamed because he knew that John was thinking about him, just like he said backstage. John told the crowd that Isaac said something to him backstage that “changed his day, his week, and possibly his whole life” and then recalled that moment when Isaac went running back down the hallway to him.

The rest of the show was wonderful. At one point, Isaac was playing air-guitar in the aisle and Mayer hopped up on his speaker and ripped into a guitar solo. For quite some time, the two were watching each other (John waved at Isaac) and playing their guitars - both content beyond belief. At the end of the show, John told the crowd about Isaac and where people could find information about where to help. He hopped off stage and immediately tweeted to his followers about where to find Isaac online.

In less then a day, we have have received over 40,000 hits on our Isaac Foundation website. We’ve been contacted by people throughout the world with words of encouragement, love, and support. People magazine linked to our blog entry and countless organizations are weighing in on the show in Toronto and Isaac’s involvement with John.

The majority of the press has been positive. However, there are a select few organizations and media outlets that say John is “latching” on to our organization to clear his name and look like a stand up guy. Obviously these organizations didn’t do their research to realize that this kindness isn’t anything new for Mayer. John has been with Isaac for some time now and genuinely wants to help.

In my mind, anyone who would take this incredible night and try to minimize it as a publicity stunt is disgusting, arrogant, and writing with blinders on. Mayer wants nothing but to increase the quality of life for our little boy. He wants to make a difference because he know he can. This isn’t an attempt to calm the tide.

To those of you who are blogging and writing, I ask you to think about these things before hitting the “send” button on your opinion piece - Is it so wrong to want to help us find a cure for a ravaging, very rare and debilitating disease that threatens our son’s life? If you could help provide hope for the future of a little boy, would you? Mayer wants to make a difference for our son, and he is in every way possible. This isn’t about anything but wanting to help.

Ellen and I will forever be in debt to John Mayer for the special way he treats our son and our family. This has been a long and difficult journey for us. We’ve never given up hope, even through some of the most difficult and dark moments of our lives, and I would never wish this journey on anyone. But if I had do it all over again, I would. We are blessed to have the family we have, and the love we get from our boys is indescribable.

To finish, I want to send out a lyric from one of John’s songs entitled “The Heart of Life”. During the first days of our journey, I often found myself wondering how we were going to find a way to save our son from the terrible fate that lay before him. As always, I turned to music and found this from Mayer: “Pain throws your heart to the ground / Love turns the whole thing around/ No, it won’t all go the way it should / But I know the heart of life is good.” During those early days, these words gave me hope when hope seemed lost; they gave me the strength to carry on, and they showed me that nothing good was going to come from us waiting around for something to happen. These words gave Ellen and I the perspective we needed to begin this charity and find a way to help our son. Now, 3 years later, these words show me that Mayer was right - The heart of life IS good. And I know that Mayer believes this too, and he demonstrates it each time he connects with Isaac.

I hope the media pick up on the good that John does. He deserves for the world to see the real person; the person behind the mask and the walls he’s felt he’s needed to put up over the years. I want the world to know how caring and compassionate he is. I want the world to know that he believes in Hope, and the Heart of Life, and that there is a future for Isaac. I want the world to know that he’s helping us find a cure; he’s helping us save our son.

But, in the end, if the media doesn’t print the good in John, it doesn’t matter. We know, and John knows, and sometimes that’s all that truly counts.

Thanks, as always, for your support.

With Love,

Andrew

The Isaac Foundation

In Defense of John Mayer

2010-02-11T08:58:00.000-05:00

Hey Everyone,

Things are going well for us here at The Isaac Foundation. We are in the midst of planning our RUN FOR ISAAC! event at the National Capital Race in Ottawa again this year and are beginning to invite celebrities to our Golf Tournament, which will take place in June again at the Rivendell Golf Course in Verona, Ontario. In addition, we are in preliminary talks to host a gala event in Cobourg sometime this summer or fall! I hope to get some more information on the website sometime this weekend.

I thought I would take to our blog to write a quick defense of John Mayer, someone that I have grown to respect for the kind, caring, and compassionate person that he truly is.

I don’t care what Playboy Magazine writes about the man, and I don’t care what John says to the journalists that write what they do about him. In America, it’s all part of the game - get in People Magazine, light up the blogosphear, stay relevant - end of story.

I recognize that John plays the game better than most because he’s one of the most written about celebrities on the planet. I know he has said things that turn people off. I know he’s said things that make him sound like someone you would never want your children around - ever. But I also know the person that he truly is and the good things he tries to accomplish with the celebrity status he’s achieved.

Although I’m clearly a biased individual, the wonderful things he has done for my son Isaac stand out as some of his best charitable work. And I feel that he does it out of a true love for our son and the hope to help us find a cure for him. The genuine time he gives him during his stops here in Canada, the warm reception he gives Isaac each time he sees him, and the special way he makes my son feel is something that I will always appreciate the man for.

And for Ellen and I, the feeling of hope he gives us and the feeling that we are making a real difference on the road to finding a cure for Isaac is all that matters. Write what you want about John, think what you will, but before you hand down your verdict on what kind of person he really is, please consider the good he has done in his life.

I’m typing this away as I snuggle up with the boys. They had a fun day at the hospital, came home and made John a Valentine to give him on Sunday. They are looking forward to seeing John at his concert in Toronto. A few minutes ago I asked Isaac to tell me three words he would use to describe John and he responded “Nice, Friendable, and Loveable”. Print that bloggers, and give John his fair shake.

With Love,

The Isaac Foundation

WE'VE MOVED!

2009-11-25T21:01:00.002-05:00

Our blog has been moved! Please update your RSS feeds and direct them to:

http://www.theisaacfoundation.com/The_Isaac_Foundation/Blog/Blog.html

Warmest,

Love, Laughter, and Hope

2009-11-25T08:59:00.000-05:00

Hey Everyone,

As I type away at our blog, one of the first entries of our new website, I’m sitting in the playroom at The Hospital for Sick Children in Toronto. My boys are playing together while Isaac receives his weekly Enzyme infusion, a treatment we worked so hard for him to get, and something that is keeping him afloat until we can find a cure.

The boys are tired after a long night in Toronto. John Mayer was in town to launch his latest album, Battle Studies, and Isaac was anxious to reconnect with his hero, friend, and favourite musician. We contacted John and he arranged for our family to have some guest passes to watch the show and say hello before he took the stage.

Since hearing the news last week, Isaac and Gabriel have been VERY excited! They worked away at making a card for him, and then spent the night before the show before putting together a special craft that they could give to him as thanks for taking the time to say hello.

Since the new CD came out, the boys have been taking every opportunity to listen to the new music. They were thrilled to watch the online concert from New York last week and they jumped around and sang for the entire concert! Their favourite song is “Half of My Heart”, a song that, of course, features Taylor Swift, another of the boys’ favourite singers. When Mayer sang the song during his online concert, Isaac was puzzled to learn that Taylor Swift would not be there to sing her part. “Well, who will sing it?” was the question he kept asking. He decided that he would be the best candidate to replace Taylor Swift and proceeded to make his card for John with that very picture inside, with John singing his part and Isaac singing Taylor’s part.

Isaac and Gabriel also thought it was pretty funny to see John standing on a carpet while he was playing his guitar onstage, which provided the inspiration for their craft. They worked hard to make a pop-up card for him. When the card is opened, John, Isaac, and Gabriel pop up on stage. Of course, all three of them are singing and playing guitar on their very own carpet. To say the least, it was an exciting week and fun week at home during the lead up to the show.

Heading into the show, we didn’t really know what to expect. The last experience for Isaac was incredible, and Mayer was so kind and caring that it was hard not to think about how disappointing it could be for him if he didn’t get the same warm reception this time around. We fully understood that John is a busy person, and this concert was the kick-off to his new album in Canada, so we prepared Isaac that John might not have that much time to spend with him and even a quick hello would be very special. But once again, John showed how truly caring and compassionate he is and gave Isaac (and Gabriel!) another life-long memory.

Walking backstage, we joined the rest of the Meet and Greet winners and waited for everyone to be finished with their photo-op with John. Isaac and Gabriel stood at the back of the room and watched with huge smiles on their faces as Mayer posed for a picture with each group. When John spotted Isaac at the back of the room, he flashed a bright smile before returning his attention to the Meet and Greet group. He took the opportunity to sneak another smile and wave at Isaac before it was our turn and, upon seeing this, Isaac went running across the room to Mayer and gave him a big hug. It was, perhaps, one of the sweetest things I have seen in a long time! Gabriel soon joined them and the boys presented John with their cards and craft.

Mayer spent a lot of time talking with Isaac, joking around, and genuinely enjoying the visit and the opportunity he was providing our young son. And Isaac finally got to ask him what he was going to do for Taylor Swift’s part during “Half of My Heart”! John responded that he was going to let someone else in the band sing the part which, I thought, would disappoint Isaac. But, Isaac being Isaac, he brought us all to hysterics when he responded, “Well. Maybe we should unplug their microphone so nobody can hear them and I could come in and sing the Taylor Swift part instead!” After the laughter subsided, John invited Isaac to his soundcheck in February to sing the song with him on stage; a truly generous offer. He then started singing the song, with Isaac filling in Swift’s part. This will be a memory we will cherish forever. I quickly snapped a photo with my cell phone, which I’ve posted on the right. As show time approached, our visit ended and John headed to the stage. Our family headed up to the VIP section to watch the show - Gabriel made it through 1/2 of it, Isaac watched it all, including the final song of “Friends, Lovers, or Nothing”, which was dedicated to Isaac. The marvellous show capped off an incredible night.

For me, the most special part of the evening was when Mayer remarked on how healthy Isaac is looking. And he’s right. Isaac is as healthy as he has ever been and we are thankful every day for that. Not a moment goes by when we don’t realize how lucky we are to have him in our life and to understand how far he has come since we began this battle. But we’re also very careful not to get too comfortable - you never know what the next doctor’s appointment will bring, or what the next test will say. We’ve gotten too comfortable before, and the pain comes back that much quicker if you forget what you’re fighting. We were able to tell John about the exciting research we are funding in Australia and New York City and our hope that one of them will lead to a cure.

I was very impressed with John Mayer last night. He took the time and effort to provide Isaac with another positive life experience and showed us that he is an incredibly caring and compassionate person. He made our son feel special and showed us why he truly is a role-model we can be proud of for our kids. Say what you want about John Mayer (and many of you will), but from what we have seen of him shows us that he is nothing but one of the kindest, sweetest, caring people we know. Tabloids and newspapers seldom write about the good in people; I guess it’s not what the world wants to hear. But John Mayer is more than what you see on TV or what your read about in magazines - he’s a kind, caring, man who has made a dramatic difference in our lives.

For Ellen and I, his kindness reminded us that we still have Hope for a cure. We’re a small family, working at a small charity, raising small amounts of money, but we’re fighting the war of our life. Sometimes we forget how far we’ve come and the inroads we’ve made in order to make a difference in Isaac’s life and find a cure for him. Seeing how loving John was with Isaac reminds us that we’re not alone - we have others dreaming for the same thing we are, and I know that John will be there with us along the way to help make those dreams come true.

Our motto at The Isaac Foundation is “Love, Laughter, and Hope”. Last night we saw and felt all three in John Mayer, and it couldn’t have been better. Thanks John.

And Thank you, as always, for your support.

- Andrew

Mayer Revisited

2009-11-19T20:17:00.003-05:00

Hey All,

Sorry it's been so long since our last update. We had a long summer on the election trail and are just settling back into a normal routine now.

This will also be a quick post to let you know we will be re-launching our website this weekend and we are quite excited about it!

On Tuesday, Isaac and Gabriel will have the opportunity to say hello to their hero, John Mayer, in Toronto again. They are thrilled! As I type away, they are watching the online webcast of his live concert from New York. We'll be sure to update after the show on Tuesday.

Thank you for staying with us over the years. Your support has helped us make a difference in Isaac's life and we can't thank you enough.

See you this weekend,

Andrew

THANKS!

2009-06-21T21:15:00.004-04:00

Hey Folks,

Very quick post today, just wanted to extend a sincere thank you to two students from Kingston, Ontario for their kind, caring, and sincere effort to help find a cure for Isaac. Kelvin and Alex took a week away from their recess breaks (the best time at school for kids!) to sell books that they made. All proceeds went directly towards The Isaac Foundation.

Empathy is the most difficult emotion for children to understand. It's clear that Kelvin and Alex truly understand. Thanks, boys!

Best,

An Update, with Thanks.

2009-04-30T22:05:00.007-04:00

As I type away at this long overdue blog entry, I am sitting on a plane to Vancouver, eager to take my place as a delegate at the Federal Liberal Convention. The time alone, the dim lights of the airplane, and the beautiful view out my window have finally allowed me time to look back at the past few months and reflect on where we are on this long journey and look forward, just a little, to see what the future holds for us.

Thankfully, Isaac continues to be in excellent health and is, perhaps, as healthy as he has ever been. He continues to grow, his joints appear stable, his heart condition has improved and his breathing sounds less laboured. He continues to thrive in his Kindergarten class, under the watchful eye of his wonderful teacher, Ms. Rutherford. Isaac craves knowledge, and he enjoys the people that feed that craving. His love for life is very evident and his laughter infectious. Watching him play with his brother, his best friend Gabriel, inspires us and warms our hearts.

There isn’t a day that passes when we aren’t thankful for everything that we have in our lives. While this journey has been incredibly difficult, it has also been a rewarding experience that we cherish. We have been able to learn valuable lessons about ourselves and bond as a family in ways I had previously never imagined possible, and we learn more and more each day.

The past few months have been busy as far as Foundation work goes. We worked hard on our Christmas mail-out campaign and were blessed by many generous donations to our organization and our fight for Isaac. We appreciated all the kind notes that came our way and enjoyed the opportunity to update our supporters about Isaac and our fight for a cure. In addition, we continued to grow our support base, inform the public about MPS VI and advocate and support families across the world that are, unfortunately, beginning the battle we are now fully entrenched in.

We fully recognize that it is harder to manage this fight for our son without the support of our friends, family, and the broader community around us. Our volunteers have been instrumental in keeping our momentum moving forward and, as National Volunteer Week kicks off, we would like to thank all of you that have worked so hard to keep us going. The long nights and early mornings spent planning and implementing our fundraising events are made easier with your involvement. From the marathon runners and family walkers at our RUN FOR ISAAC! event, to our dedicated team at the celebrity golf tournament, to my group of grade 8 envelope stuffers, please understand how much we appreciate the impact you have on our lives. I wish we could recognize you more for the work that you do and we look forward to celebrating with you when we finally find a cure for our son.

Special thanks needs to be extended to two such volunteers, Alix Hall and Jasmine Ma., for their efforts organizing the Victoria Hall Charity Run for Isaac this past March. The event was an incredible success, thanks in large part to the dedicated efforts of Alix and Jasmine. Because of their determination, their small event turned into a large gathering of support for The Isaac Foundation. Their efforts helped to raise over $1700 and help us pave the way to fund more innovative research into finding a cure. Both Isaac and Gabriel attended the event, cheered on the runners, and charmed their way into the hearts of many new supporters. I won’t soon forget the beautiful image of my two boys running to meet Ellen as she raced towards the finish line. Thank you Alix, and thank you Jasmine for your work, for your drive, and for your desire to make a difference. It may be overdue but please understand how heartfelt our appreciation is.

Our recap of the first quarter of 2009 cannot be complete without recognizing the tremendous support we received from Toronto Blue Jays Ace and Major League All-Star Roy Halladay, and his compassionate wife Brandy. Roy was selected as the Toronto Sun Sportsman of the Year for his generous work in the community. Part of his award was a donation to the charity of his choice and he selflessly selected The Isaac Foundation.

We were fortunate to meet Roy and Brandy during our 2008 visit to Doc’s Box, a private suite at the Roger’s Center that the Halladay family provides to kids from the Hospital for Sick Children in Toronto. They have renovated the suite specifically for the benefit of the children and both Roy and Brandy work hard to ensure that sick children are able to escape reality of the harsh world around them for a few hours and watch the Blue Jays play from the comfort of their box. Roy ensures he takes the time to visit the children and their families before game time, signs balls for the kids, and answers their questions about his life in the the Big Leagues. Brandy, ever patient, kind, and considerate, watches the baseball game with the families and ensures that she provides a warm and comforting environment for all of her visitors.

During our trip in July 2008, Brandy and Roy were able to provide our family with some much needed downtime in their suite. We had just finished our week-long stay in the hospital and received our invitation to watch the game from Doc’s Box. It was here that both Brandy and Roy made a special connection with Isaac and Gabriel and it was here that the Halladay’s support of The Isaac Foundation began. From here, Brandy and Roy advocated for our son and our organization, vowing to bring awareness to our cause and our tireless hope for a cure. Brandy worked to promote The Isaac Foundation during telecasts of the baseball games and stayed in contact throughout the ball season in order to get updates on Isaac’s health. At the same time, Roy became a hero for Isaac and Gabriel as they watched him pitch on the television screen. The look up to him and enjoy seeing him play baseball and they pretend they are both “Roy Holiday” as they learn to throw and catch a ball of their own.

Roy has, in my eyes, also become a mentor, but not because of the magic he works from the pitcher’s mound. While he is, undeniably, the best pitcher in the Major Leagues, and he has won countless awards during his illustrious career, it needs to be remembered that there have been many “best pitchers” before Roy Halladay and there will be many more “best pitchers” after him. He has, like so many others, left his mark on the game of baseball but it is the impact that he has had on the life of our son, the example he sets for those around him, and the perspective he has on life that I truly respect.

Roy and Brandy work to bring joy to those that surround them and they endeavour to provide opportunities to countless people less fortunate then themselves. They are giving of their time and patient with those in need. Most importantly, they are parents themselves and they truly work hard to teach their children through the examples they set. They take joy in helping others and pride in their efforts to make this world a better place. They are kind, and caring, and compassionate; they are empathetic and loving, and they encompass all the positive qualities that any parent would want to share with their children. They have perspective, and they recognize the important things in life.

This was evident for our family during our visit to the Roger’s Center for a special presentation to The Isaac Foundation before the game on April 7^th, 2009. Roy was receiving his Sportsman of the Year Award and asked us to be on hand to celebrate with him. The sheer joy that came from him as he saw Isaac and Gabriel running toward him is something I will never forget. The kindness he showed them, the love he gave them, and the genuine excitement he had while interacting with them all stand out vividly in my mind. Roy Halladay, the person, was being celebrated on that night, and he ensured that our children got to share in the celebration with him. He took the time to visit with the boys and scooped both of them up in his arms during the video presentation to the crowd. He truly cared about our children and vowed to fight for our son alongside our family.

Long after his Major League Baseball career has come and gone, Roy Halladay can look back on his accomplishments and have every reason to be proud. The Cy Young Awards, the records, the strike-outs, and wins will mark his history and his place in the game. But it will be his accomplishments off the field, the love he has shown their children, the example he has set for them, the lives he’s worked to impact and, hopefully, the part he played in finding a cure for Isaac, that he will forever be defined by. I’ll take a good person over a good baseball player as a hero in my life any day. In Roy Halladay, I have both.

Well, plane is now landing and I’m realizing that I’ve been typing for far too long. This weekend will bring me incredible joy as I follow my dream of standing for public office and follow my passion for advocating for those in need. I’m glad I’ve had this time to reflect on the past few months and I’m glad I’ve had the opportunity to dream again about our future.

I’ll try to update more regularly. Thanks, as always, for your support.

With Love,

The Isaac Foundation

Doc Delivers As Role Model - Donates Prize to The Isaac Foundation!

2009-02-08T11:26:00.003-05:00

From The Toronto Sun - December 2008

The trophies sit alongside a stairway inside the Halladay household.

The 2003 American League Cy Young Award presented to ... Roy Halladay.

In front of it stands a silver horse, the American Quarter Horse Association Rookie of the Year trophy presented to ... Brandy Halladay.

The Halladay house of honour in Odessa, Fla., now has another award.

Roy Halladay, the Blue Jays' ace right-hander, is the winner of the fifth annual George Gross/Toronto Sun Sportsperson of the Year award. The award goes to the athlete judged to have had the most impact on the Toronto sports scene in 2008. A $1,000 donation will be made in Halladay's name to the charity of his choice.

Halladay was selected over nominees Mats Sundin of the Maple Leafs, Chris Bosh of the Raptors, Daniel Nestor, a doubles winner at Wimbledon, Don Cherry of Hockey Night in Canada and Jays manager Cito Gaston.

Previous winners are Mike (Pinball) Clemons of the Argos; the Toronto Rock lacrosse team; Cassie Campbell, captain of Canada's gold-medal winning Olympic women's hockey team; and Bryan Colangelo, Raptors general manager.

"Wow, it's good company. Both the past winners and the people in contention this year, have all done a lot for sports in Toronto and Canada," Halladay said of the list of names. "Obviously, getting picked is an honour. It's nice to be associated with all those names."

Halladay has been a mainstay of the Jays for a decade, since bursting into prominence as a 21-year-old in 1998.

In his second career start, he took a no-hitter into the ninth inning against the Detroit Tigers.

That game was no fluke. He won his Cy Young five years later and, this past season, was a 20-game winner for the second time. A workaholic on a "don't stop until you drop" program, his fitness enabled him to throw 246 innings and finish as the runner-up in Cy Young voting to Cleveland Indians lefty Cliff Lee.

Halladay's rise has not come without its setbacks. He has a career record of 131-66 -- 113-49 since he was demoted from the major leagues back to class-A Dunedin in the spring of 2001 to re-invent himself as a pitcher.

"A lot of things changed for me then," Halladay said.

But it is not just on the ball field where the 6-foot-6, 225-pound star shines. He and his wife Brandy are known for their involvement in the community, and especially their work with children. If there is a role model in sports definitely worth emulating, Halladay is your man.

"I try to be as helpful as I can, be a good person," Halladay said this week when informed of his most recent accolade. "I feel it is more important to be a good person than a good pitcher. I had to get to the point where I liked the person I was, regardless of what happened on the field.

"You play for a short period, substance is more important. It's more important that you are a good father, a good husband and a good person in the community. That really defines who you are."

Besides pitching every fifth day and trying to go nine innings, Halladay and his wife entertain 10 to 15 children from the Toronto Sick Kids Hospital in a Rogers Centre Skybox on Sundays.

"We go up, say hi, take pictures," Halladay said. "We're trying to move forward in other ways. They've upgraded and updated a lot of rooms at the hospital. Some still need more, we're trying to improve some of their treatment rooms."

Halladay went 20-11 in 33 starts this past season, his 11th with the Jays -- and first since age 12 without mentor Bus Campbell. Spring training 2008 began with a flight from Tampa to Denver for Campbell's funeral.

For years, Campbell, having charted pitches after watching on the satellite dish that Halladay had purchased for him, would call his former pupil.

"This year was different, I was used to being able to talk to him," Halladay said. "With the people we had in Toronto (pitching coach Brad Arnsberg), unless it got drastic, we were pretty good at fixing things."

Halladay fits the sexy tag of franchise player, despite talk that the rebuilding Jays should deal him for three or four players.

"Playing my whole career with the same organization is something I'd like to do, something everyone would like to do," Halladay said. "The hard thing is it takes two parties to agree on it."

Halladay is humble, as one friend says: "Humble enough to be mistaken for a Canadian."

"I don't need much," he answers when asked if he gets the proper credit. "People in Toronto are grateful -- any time I run into someone they are very complimentary."

Growing up in Arvada, Colo., one of Halladay's role models was two-time National League MVP Dale Murphy of the Atlanta Braves.

"I could not tell you any of Dale Murphy's stats but I know how great a man he was, what a family man, a father and what he did in the community," Halladay said.

So, how is Halladay a great father to his sons Braden, 8, and Ryan, 4?

"On the day they move out of our house, I want them to know that they got the best from me; that it wasn't about me, it was about them," the proud papa said. "I'd rather be their friend first."

And how is he a great husband, aside from allowing Brandy to take a turn at the TV remote control when his favourite show, Survivor, is playing?

"My wife has to take the back seat most of the season and put off some of her hobbies. It's easy, sometimes, in baseball, where everyone is talking about you, to forget," Halladay said. "I try to do more for her during the winter and put baseball on the back-burner."

Brandy has three quarter-horses -- Colby, Mutt and Certs -- boarded 15 minutes away at Showcase Farm in Lutz, Fla. She competes in English and Western riding disciplines at competitions around the Tampa Bay area.

Halladay's off-season support begins with him taking the kids off mom's hands on competition weekends.

A year ago, Brandy broke through with four wins at the Tampa Fairgrounds. The five judges gave their results with riders atop horses inside the ring, as husbands, children and boosters nervously waited.

"It was cool," said Halladay, who stood and cheered when Brandy got her first first-place finish. "It took her a while before there was a seventh (out of a field of 45) or an eighth. Then, that one weekend, Brandy had four (firsts)."

Brandy didn't receive a phone call from the AQHA secretary when she claimed the rookie of the year -- as Halladay did from Baseball Writers' Association of America secretary Jack O'Connell when he won his Cy Young.

"They base (his wife's award) on a point system and put it on the website, not a lot fanfare," Halladay said.

Provided Colby's tendons are 100%, Brandy will ride at competitions in Florida and South Carolina next month. She also hopes to make the All-American Quarter-Horse Congress in Columbus, Ohio in 2010.

With husband supporting wife, with wife supporting husband, this is an award-inning household.

Braden Halladay, a ferocious 58-pound nose tackle, played for the East Lake Eagles in the Little League Super Bowl. Games are played at 8 a.m., so that means a 6:30 weigh-in for the under-60 pound division.

The mighty Eagles got off the final play with nine seconds remaining and scored the only touchdown with zero time on the clock to beat the Countryside Cougars 6-0.

"The parents went crazy at the end, not me," said Halladay, who cheered on the Eagles.

East Lake was given a trophy and all the players received a medal.

And where is Braden's medal now, hanging over the stallion's head alongside the stairway?

"Actually," Doc said, "it is."

Christmas at Sick Kids

2008-12-27T16:03:00.002-05:00

As I type this long awaited blog update, I’m sitting on the 4th floor of The Hospital for Sick Children in Toronto, our second home. I’m overlooking the atrium, much quieter today than on most days of the year here. It’s Christmas Eve and most people are home with their families…today is a day for the most urgent procedures and appointments.

Isaac, Ellen, and Gabriel are here today to spend the day together, get Isaac’s infusion, and enjoy the anticipation as it builds until Santa’s arrival tonight. I have to say; being at Sick Kids’ on Christmas Eve definitely is one of the most humbling of experiences. It’s calm here, and it’s providing me an opportunity to look back on the past year and look forward to everything that is yet to come.

It has been another year of highs and lows and we are grateful for all of the support we have received from friends, family, and the general public. We are truly humbled by the kindness that continues to pour in, offers of donations, and warm and supportive notes that come our way in the mail and via email. When we get down or things look bleak, it is these encouraging messages that give us the extra boost we need to stay positive and battle through. Thank you to everyone, you’ll never know how much we appreciate your support in our times of need.

This year also saw some incredible people chip in to support our cause and, more importantly, bring some cheer and joy to Isaac. Musicians John Mayer and Danny Michel proved to us that music does make a difference, and they both selflessly took time to visit with Isaac after their shows, something that we will always be grateful for. The look on Isaac’s face as his hero’s played their music on stage will never be forgotten, nor will the everlasting smile and the stories he has told about his time with them.

We also have been fortunate to have the support of Brandy and Roy Halladay. Roy is a pitcher for the Toronto Bluejays and his wife, Brandy has been working to raise awareness of Isaac and MPS throughout the course of the past year. We met both Roy and Brandy during a trip to the baseball game (Roy donated his box to the hospital in order to give some of the kids a nice day out). Brandy went further and promoted our cause on the television during one of the Bluejays telecasts and has kept in touch since the season ended.

These two musicians, as well as Brandy and Roy Halladay, took a step back from their busy lives to make a difference in the life of my son. They realized that they are in a position to help and have worked to spread awareness of Isaac and his disease, knowing that someone listening and reading might be able to help us find a cure. Thank you Danny, thank you John, and thank you Brandy and Roy, for your unrelenting kindness.

Better end this blog for now. Christmas Eve isn’t a time to be wasting the day away on the computer. Even though were here at the hospital, I’m glad we’re here together and enjoying the day as a family.

Merry Christmas to Everyone,
With Love and Thanks,
Andy, Ellen, Isaac, and Gabriel
The Isaac Foundation

Isaac Meets Another Hero, United Way, and First Day of School!

2008-10-19T14:30:00.003-04:00

Hi All,

Well, here we are again with a month or two (or three?) going by without a blog update. Things seem to get busy and the first thing to suffer is the blog!

Since our whirlwind summer and the excitement for Isaac over his meeting with John Mayer, things have been going extremely well. Most significantly, Isaac started school in Campbellford. He's thriving under the kind and caring guidance of his teacher, Ms. Rutherford. While it truly was a difficult experience sending him away to school, we are conforted by the knowledge that Ms. Rutherford is his teacher. Isaac comes home and speaks so highly of his teacher and his love of school that letting go has been a bit easier than we thought.

This past weekend, Isaac and Gabriel had the opportunity to meet one of their heros, Danny Michel. Danny has just released an incredible record called Feather, Fur, and Fin (www.dannymichel.com). I never thought that John Mayer could ever be replaced on Isaac's iPod, but Danny Michel has done it! Isaac and Gabe wake up most mornings and give us a concert on the living room couch. They throw the pillows on the ground, crank up the iPod to Michel's "Sweet Things" or "I'm A Love With You Anyway" and they sing and dance away! I'll have to record a decent video and upload it soon because it is such a cute site to see!

Anyhow, Danny Michel has been touring with our friend, Stuart Mclean from CBC Radio's The Vinyl Cafe. The kids were getting old enough for us to be able to make our first trip to Stuart's show, and when we discovered that Danny Michel was the special musical guest, we had to go! For about a month, the kids talked about how excited they were to be able to meet the singer, and Danny didn't disappoint. He took the time to say hello to the kids during the Intermission and then spent some quality time with both Isaac and Gabriel after the show. Pictured above is a grainy (sorry!) image of Isaac with his new pal. Even though the kids were exhausted (it was 10:30 by the time the show ended!) they were relatively well-behaved and sociable.

We were so pleased for our kids that they had the opportunity to meet one of their heros. However, Ellen and I were more impressed with how caring Danny Michel was. It's one thing to take a minute or two for a few young fans, it's another thing to spend some quality time with them and truly make them feel important. Danny Michel didn't make the kids feel like they had to rush through their time together. He pulled up a chair and talked with my kids like they mattered. He played with them and laughed with them and, in essence, maintained his status as a hero in their eyes.

All too often we hear about musicians becoming too big for their fan base. From what I saw of Danny Michel last night, he has his priorities straight and deserves all the stardom that will come his way.

By the way, he's an incredible musician as well! Please drop by www.dannymichel.com and check him out. Remember, he's officially endorsed by Isaac and Gabriel!

On another note, United Way has begun their annual fundraising campaign. If you are in the habit of giving through your workplace, either for a one-time donation or automatic payroll deduction, you can have your donation directed to The Isaac Foundation. Simply fill in our business number on your form.

Thanks for your support.

The Isaac Foundation

OK Magazine Upload

2008-07-18T03:31:00.006-04:00

Hey All,

Here are a few snapshots of the latest OK! Magazine. Isaac and John Mayer get a little photo and quick write up on the same page that the wedding gossip about John and Jennifer Aniston takes place.

Thanks again to John for allowing them to print this bit, and to Lauren for releasing her photos to the magazine!

Best,

OK! Magazine, Isaac and John Mayer

2008-07-16T08:51:00.005-04:00

Hello Everyone,

Isaac's photo with John Mayer, as well as a short write up about their night together at the Toronto Concert, will appear in the latest edition of OK! Magazine. If you're in a larger centre, the magazine should be on the rack today. Smaller centres will have it available by Friday.

The cover of the edition you should be looking for is on the right.

Thanks to Lauren Trazaska (www.soundcapturephotos.com), Mayer's official photographer, for allowing the magazine to use her beautiful photos. Lauren ended up being our tour guide for the meet&greet and we could tell immediately that she was a wonderful person. She was patient with Isaac and allowed him to look around backstage, play with her camera, and ask as many questions as he wanted. She's an amazing photographer and we appreciate her sending the shots to the magazine.

Isaac is doing well. We'll try to upload the article as soon as we see it.

Best,

The Isaac Foundation

Almost Home...

2008-07-14T12:54:00.002-04:00

Hi Everyone,

One week away and we get to go home after treatment today. We will finish the week as it started…treatment (Enzyme Replacement Therapy) at Sick Kids’ Hospital in Toronto. We’re all exhausted after such a long week, but it’s a good exhaustion because we know everything has gone well with Isaac. He’s hearing much better and his breathing has dramatically improved. Still, it will be nice to be at home for the first time since last Monday.

It has been quite a surreal 7 days for our family, starting with our John Mayer concert on Monday and finishing with a trip to the Blue Jays game on Sunday (we all watched the game from Roy Halladay’s private box with some other kids from the hospital!) Mayer’s experience with Isaac and his subsequent blog about their time together started a whirlwind of interest in our son and The Isaac Foundation. We’re so fortunate that John took the time to raise awareness of Isaac and his disease and we’re indebted to him for his kindness. Blog sites have linked to our pages, wonderful and caring people from around the globe are taking the time to email with kind words of hope, and generous individuals are taking the time to donate to help us fund research projects and find a cure. We really are blessed to have so much support and we know that we will find a cure for Isaac and other affected children worldwide.

As I type this entry, Isaac is fast asleep in the chair beside me, the Enzyme he so desperately needs is slowly dripping into his body. A little boy, 13 years old, has just rode a small tricycle into our room. Incredibly, he has the same disease as Isaac. He has been visiting from Germany for the past 3 weeks and has been receiving his Enzyme Replacement Therapy here at the hospital.

Watching him puts in perspective just how lucky we are that Isaac started treatment so early. This child has suffered greatly during his 13 years and has just begun to receive his treatment a few years ago. Before ERT started, his growth had shut down, he underwent a tracheotomy, and he lost the ability to move his arms and legs. He also cannot speak. Since treatment began, he has begun to regain the ability to move his extremities and now rides his tricycle everywhere he goes.

To me, seeing this child here is like getting a glimpse into the future we would have had if we hadn’t fought to get Isaac on ERT to slow the progress of the disease. Without certainty, Isaac would have been that boy on the tricycle in a few years and that is something I can’t bear to think about. Watching this child ride around the hospital is both heartbreaking and beautiful to me at the same time because I know how much he has suffered yet I do see and feel that there is a glimmer of hope for him.

It’s moments like this that really bring to the forefront the dire need for a cure for this horrible disease. ERT is just a lifeboat for Isaac, a treatment to keep us afloat until we can figure this out once and for all. But occasionally I feel like our lifeboat is slowly losing air and that we’re running out of time. Finding out that Isaac’s breathing had deteriorated so rapidly (we had a normal sleep study just one year ago) was difficult to handle. It was proof positive, once again, that we’re still fighting a terribly progressive disease, and no matter how much the treatment is slowing it down, we’re reminded that we need to redouble our efforts and find a cure.

But finding a cure isn’t something that we can do alone. No matter how many nights we stay up late to send out tax receipts, or how early we get up to plan events, no matter how many weekends we spend at Isaac Foundation initiatives, we’ll never be able to cure this alone. I guess this is why we’re so thankful to John Mayer for bringing Isaac and his disease into the public light, even if it’s only for one shining moment. By simply putting news of Isaac on his blog, John Mayer has sent more traffic to our website than we had all of last year alone. He has sent the public in our direction and word about MPS VI has spread far and wide. Perfect strangers are rallying around our son and our Foundation and we’ve been reminded that we’re not alone in our fight for Isaac. I’m truly comforted by this realization. It’s that comfort that will bring us through the down moments and the difficult times, and it’s that comfort that will continue to help us find the strength to fight for a cure.

I remain confident that one day I’ll be uploading our blog entry with news that a cure has been found. I know that we will be celebrating the fact that the little boy on the tricycle has received a second shot at life, and I’m confident that Isaac will be alright and never have to suffer. And when that moment comes, we’ll celebrate together with those that have helped us along the way and we’ll celebrate with those, like John Mayer, that made sure we didn’t have to do this alone.

Anyhow, we have plans to take the train home today, something that Isaac loves to do.

Thanks for stopping in and for your support. Like I said, it’s comforting.

Warmest,
The Isaac Foundation

Join Our Facebook Group...

2008-07-12T08:27:00.002-04:00

Below is the link to our Facebook group, which we use to send out our updates on Isaac and the Foundation. Please join up, and send it to your "friends" as well.

http://www.facebook.com/group.php?gid=2275845012

Warmest,
A.

Our DVD...

2008-07-12T00:17:00.004-04:00

Hello All,
We've had lots of questions about Isaac, MPS VI, and our Foundation, and I'll do my best to get back to everyone as soon as I can. In the meantime, I thought I'd re-upload our DVD that we made when Isaac was first diagnosed. We put it together as a way to help raise awareness of this disease and to help push our Ontario Government to help fund the expensive treatment, which costs up to $1,000,000 per year.

Not sure how much it helped with our efforts, but it does get used by families around the world that have to experience the painful news that their child might have MPS.

The DVD contains a 3 minute slide show of Isaac and some family photos, an interview with Dr. Joe Clarke, one of North America's leading MPS Specialists, and information about The Isaac Foundation and our quest for a cure. the video is about 14 minutes long so grab some popcorn! And thanks in advance for sparing some time to see it...

As soon as we completed the DVD, Isaac did have a spinal cord decompression surgery to help alleviate the pressure that was being put on his spinal cord. They took out his C-1 Vertebrae and a piece of his occipital bone and it has helped dramatically! We also (obviously) got treatment brought to Canada AND covered by our provincial health care system. But we need a cure and we still feel the video explains who we are.

Thanks again for stopping in.
Best,
A.

Some Overdue Thank-You Notes and an Update on Isaac

2008-07-10T19:34:00.012-04:00

Hello All,

I've finally found an internet connection, although I'm not sure how long it will last for. It's great to actually type on a blog entry on a computer! (I've been using my little mobile phone to update our blog recently...)

Isaac woke up this morning in a cheerful mood, and was raring to go! A BIG change from yesterday. He hopped onto his "big red car" and toured the floor we were staying on, played with CLUTTER the clown for a while, and then was discharged! We are currently out of the hospital but have to stay in Toronto until at least Monday due to a small chance of bleeding for Isaac. While this risk is normal, the fact that he has MPS and a difficult airway isn't and they want us close to the hospital and the best care possible.

We'll make the most of our time here in the city and will try to get out for a few walks down by the water together. As we speak, we're sitting out back on the patio and taking a moment to relax. Isaac is listeing to VULTURES on his new CD player that Andrea Hoover at the hospital brought him today. It's his "bravery" gift and he's been so cute with it all afternoon! On Sunday, we will be heading to the Blue Jays game with Isaac and Gabriel, sitting in the Sick Kids' Hospital box, and watching the Jays beat up on the Yankees! I think Roy Halladay is going to drop in to say hello to everyone in the box as well.

I'll try to keep this short but I wanted to send out some notes of thanks to our visitors for their wonderful comments and for helping us spread the word about our son, our Foundation, and our hope for a cure.

To those of you that have donated using our Donate Now! link at theisaacfoundation.com,

Thank You from the bottom of our hearts. We received notification about the donations while we were sitting in the hospital with Isaac and we were truly touched by your kindness and generosity.

To the person that sent a large, Anonymous, donation, we cannot thank you enough for your support. We are proud to report that over 98% of all donations go directly toward funding our research projects into finding a cure for MPS VI (the other 2% goes into stamps and ink to send out your tax receipt!)

And we're still so blessed by John Mayer's kind heart. His blog entry has spread throughout the Internet and we've received over 7,ooo hits on our main website since his online journal ran. Mostly, though, it has raised awareness of this devastating disease that we're trying so desparetly to cure. And John didn't do it because of the positive media that could have come from his generosity. He did it because he is a caring and compassionate person that truly realizes the important things in life. And if you disagree, check out his previous blog entries. This guy gets it, and he showed it on Monday Night. Thank you, John, for what you have done. While you already had a fan in Isaac, you now have a life-long friend. And your message about life's priorities has gone far and wide. I hope many learn a bit from your kindness. Life's too short not too.

Below is a message that Isaac recorded John. As you can see, he's looking great. Enjoy.

With Love,

The Isaac Foundation

John Mayer's Blog

2008-07-09T18:25:00.000-04:00

Check out www.johnmayer.com/blog to see a beautifully written entry by John and some incredible photos of the band and Isaac. Special thanks to Lauren Trazaska (www.soundcapturephotos.com), Mayer's official photographer, for her wonderful shots.

I'll update the blog when I get a spare second.
Warmest,
The Isaac Foundation

Photos From The Past Few Days...

2008-07-08T23:30:00.007-04:00

Hi Everyone,
It's been a crazy few days! Before I post a few photos, thank you to everyone that has taken the time to send an email, post a comment, or post John's blog on their site over the past 24 hours. For that matter, thanks for linking to our blog as well. Since noon today, we've had over 3 thousand hits on our website, mostly because of of Isaac's experience with his hero, John Mayer, in Toronto. The support that we have received has been humbling.

Isaac is resting well at Sick Kids' in Toronto. He's breathing well, probably better than I've heard from him in his entire life. And in the recovery room, he's remained true to form and has been watching his John Mayer DVD on repeat.

Below are a few photos that I captured on my cell-cam over the past few, very busy days. Sorry for the quality...seems I can't shoot proper photos with my cell phone!

Again, thanks for the support. I can't express how wonderful it feels to know that we are not alone in this fight for a cure.

Best,

The Isaac Foundatoin

Photo Info: Picture 1 - Isaac during Treatment on Monday - Watching his John Mayer DVD.

Picture 2 - Our Mayer Concert Picnic.

Picture 3 - Andrea Hoover with Isaac in the pre-OR.

Picture 4 - Our Favourite Dr. - Jengus Carslie before Anesthetic.

Picture 5 - Recovery Room with Dad.

More Info...

2008-07-08T12:45:00.000-04:00

For our new visitors, please take a minute to learn a bit about our son, his disease, our Foundation, and our search for a cure at www.theisaacfoundation.com

As well, If you’d like to take 15 minutes to watch our story on youtube, our DVD about Isaac, his disease, and our hope for a cure can be found at http://youtube.com/watch?v=dcAQWUZV4nc. And finally, we’ve put our family gallery together, It can be found at www.theisaacfoundation.com/gallery

Best,
A.

Life Lesons from John Mayer

2008-07-08T11:05:00.005-04:00

As I type this entry, I am sitting in the O/R waiting room at the Hospital for Sick Children in Toronto. The collective worry of the waiting parents make this room a very quiet and serene place.

Isaac has just gone into the Operating Room for his surgery, led by our favourite anesthesiologist, Dr. Jengus Carslie, and in one hour, all of our worries will be past us.

Ellen and I went back and forth this morning, knowing that today’s surgery is routine for most kids and that it will be quick. But we also know that Isaac isn’t most kids, and his airway has been our main concern every time he has to have an operation or an MRI. While ERT is supposed to help with airway issues, we’ve been very worried that his breathing has deteriorated so rapidly over the course of the year. We are fortunate that Dr. Carslie is looking after Isaac again today. Just knowing that Isaac is under his care makes this wait a bit easier to bear.

We know that we are blessed to be part of the family here at Sick Kids’ hospital. Andrea Hoover, the child life specialist that makes Isaac’s Tuesday visits special and memorable, dropped into the Operating Room area to see Isaac off and to help distract him before his surgery. She read books with him and made him feel at ease with the pending operation. As well,Isaac's friend, CLUTTER the Clown, has been scheduled to visit Isaac in his recovery room later.

I can’t imagine spending time in another hospital for our son. The smiling faces, caring staff, and tremendous standard of care are exactly what Isaac needs during the fight that he is faced with.

Last night, we had a wonderful evening out with Isaac’s new best friend, John Mayer. At about 3:30, we got word from Mayer’s staff that Isaac was going to get to meet his idol before the concert. We lined up with a group of contest winners for our time with John, Isaac’s anticipation growing with every passing minute.

Finally, Isaac spotted Mayer at the front of the line, posing for pictures with the other people in our group, and the smile on his face was priceless! His eyes lit up and the grin was bigger than I’ve ever seen before on our child! He kept whispering in my ear “There’s John Mayer! I don’t think he sees me yet,” and “Two more people and I get to see him!”

We thought Isaac was going to get the very quick hello and the quick photo that everyone in line got, and we would have been thrilled at that opportunity alone. But John spent a lot of time talking with Isaac, clowning around in front of the camera, posing with Isaac and shouting “Cottage Cheese and Yoghurt!” (Isaac’s pre-photo saying). Isaac wanted to know if Mayer was going to play his favourite song, “Vultures”, and John told him it was the song that was going to open up the show!

If it ended there, the night would have been a thrill. But Isaac wanted to know one more thing. As I’ve previously blogged, Isaac’s been spending most of his waking moments watching John’s new concert DVD “Where The Light Is.” While he loves the songs, the spot he keeps rolling back to is the moment with Mayer and his band are walking through the hallway from their dressing rooms on their way to the stage. The music is going in the background (“Waiting on the World to Change”) and the band look so full of energy as they take to the stage. Isaac wanted to see the hallway! For most of the day, he kept opening up the DVD booklet and showing people the picture of the hallway that Mayer and his band walk down. So Isaac asked John if he could see the hallway that led to the stage.

John told Isaac he would try to figure something out, signed his DVD for him, and we were on our way back to our seats. Ellen, Isaac, and I had a picnic on the pavement (beer, pizza, pretzels, and popcorn) while we waited for Mayer to take the stage.

(Note - They have just done a Stat Call for Cardiology to the Operating Room and I’m worried that it’s for Isaac. This is a feeling that I don’t wish on any parent. Doctor’s have gone running by the waiting room and, as I look around the room, nobody here seems as nervous as I am. While I know the chances that the call is for Isaac is remote, I still feel sick because I know that a parent here is about to go through a very painful experience.

Being here is always so very humbling. This building has given me the most difficult, painful moments of my life. But our time here has also been one of reward and promise. Going through this journey has brought us very close as a family and I have cherished every moment we have spent together. We have been able to put the true meaning of life in perspective and bask in the love that we share for each other. If I had to, I would do this all over again and not change a thing.

Anyhow, back to our update, although I think it will be more difficult to type with my now shaking hands…)

While we were waiting for the show, we got a call on our cell phone with someone asking for us to meet backstage again – John had a special surprise for Isaac! Before every show, John and his band do a special cheer, a sort of team-building, bonding cheer to that prepares them for the night on stage, and John wanted Isaac to be part of the cheer.
We got back stage, John introduced Isaac to the band, and they got together for the group cheer, this time down on their knees at Isaac-level. Everyone put their hands in and they asked Isaac what his favourite words were. After a bit of thought, Isaac responded “JOHN MAYER!” The band looked around at each other and John said, “Well, OK. John Mayer on three,” and the cheer went up!

It was a beautiful moment and I was so impressed by Mayer’s thoughtfulness and his patience with our son.
After this, it was down the hallway and onto the stage to the waiting crowd of about 20,000 screaming people! And Isaac got to walk with the band!

It’s important to note that I think they had to find a hallway to walk down because we seemed to take a round-about way to the stage. But John led the way, followed by Isaac (and Ellen) and the rest of the band. And they went all the way to the stage! And onto the stage! In fact, Isaac, Ellen, and I sat and watched the show from the speaker on the side of the stage, Isaac with a beaming smile the entire show.

Leaving the stage, Mayer gave Isaac a high-five, came over to me and said “Don’t worry…we’re going to figure this out.” Whatever comes of anything, I know that he is right because I know in my heart that we will figure this out, no matter what it takes. And all the hard work and sleepless nights, and the many events and presentations we deliver, will all be worth the tireless effort.

And the people we meet along the way will be with us to celebrate when we finally announce that we’ve found a cure for Isaac. I dream of that day often, and I know the soundtrack for our evening of celebration will be John Mayer's music.

I was so impressed by John Mayer last night. Not because he put on an incredible show (and he did!) but because of the caring and compassionate way he treated my son. John took time out of his busy schedule to provide Isaac with a positive life experience, one he won’t ever forget.
He was genuine and good, proof that he truly means what he writes about on his blog.
In his latest entry, Mayer writes “It’s a funny time to be alive right now, in that I’m not quite sure we’re celebrating like we should. I don’t mean the ‘hand me your keys, Dan!’ celebrating. I mean the inate act of 'celebration’ human appreciation. Group reveling. A general sense of ‘This is my tribe and this is our fellowship.’ Like a concert.” Mayer put his words into action last night as he celebrated our son with our family. He gave us all ã moment away from it all and I will never find adequate words to properly thank him for his kindness.

Mayer also writes about the challenges that people will inevitably face in their lives: “Chances are you won’t get hit by that proverbial bus people always talk about when they’re smoking a Lucky Strike and tipping back on their chair. Odds are also on your side (thank-God) that you won’t ever get the news from your doctor that you have only months left to live. But you know what he may very well tell you? That you need a new hip. Nobody ever says ‘live it up because someday you might need a new hip’ but it’s the truth. They don’t say ‘Be good to one another because in time we’ll all know a medical lab technician on a fist name basis’ but it happens every day.
My point is that whenever that someday comes, when I slide into the MRI scanner and the thing starts spinning up, spitting lasers and screaming into my ears, I may very well say to myself ‘I wish I had just one more of those summers.’”
Mayer is right, and it didn’t take a death in the family, or a devastating diagnosis for him to realize the importance of celebrating each and every moment.
As a family, we understand this as well. Make the most of your time, enjoy your family, and cherish every moment you have together. Remember, you never know what's around the bend.

Anyway, Isaac should be coming out of the Operating Room at any moment. I’ll update more later and try to send some photos when I can.

Thanks for hanging in there with us.

PS – Doctor just came out – Isaac is fine! No airway issues to deal with, thank God.
With Love,
The Isaac Foundation

More Ups and Downs on Our Journey

2008-07-06T09:29:00.010-04:00

Hey Everyone,

It's been a month of ups and downs for us here at the Isaac Foundation. A few weeks ago, we hosted an incredible Celebrity Golf Tournament. We were pleased to be joined by Rob Baker and Gord Sinclair of the Tragically Hip, Ryan Malcolm of Low Level Flight, Larry Mavety of the Kingston Frontenacs, Former NHL great Bart Crashley, and the Speaker of the House, Peter Milliken.

24 teams joined us for the event and helped us raise over $15,000 to support our hope for a cure for Isaac. In addition, Susan Henry and Janet Grace from Royal Lepage were on hand to deliver a cheque for $2,000, part of their charitable donation from profits on the houses they are buying and selling.

Ellen did an amazing job organizing the silent auction for this years event and it was wonderful to see the response from our guests. We send out a big Thank You to all of our sponsors, which included West Jet (tickets to anywhere in Canada!) and Via Rail (first class trip to Quebec City!)

Shortly after the event, Isaac was scheduled to have surgery. He's been having difficulty hearing lately and we decided it was best to have tubes put in his ears to try to correct the problem. At the same time, his breathing hasn't been great. While he was under, the doctors figured they would also take out his tonsils and adenoids.

A few days before the surgery, the hospital called and scheduled us in for an emergency sleep study in order to gauge the need to take out the tonsils during this surgery. With Isaac's airway being poor, it was best to have a look at the need for the surgery in the first place. Isaac and I headed off to Toronto for the overnight at a private clinic on Young Street.

It's amazing how incredibly brave Isaac is during these visits to hospitals, clinics, and appointments. While I wasn't nearly as calm (or brave), Isaac rose to the occasion, helped the clinicians hook him up to the machines, and slept beautifully, all while maintaining his cheerful and positive attitude throughout.

Before we left in the morning, I had to fill out the survey, ranking Isaac's sleep with how he normally sleeps. It seemed to me that this was one of his best! Very little snoring and, seemingly, very few episodes of his breathing stopping during the night. Apparently, I was wrong. They called us a few days later to say that he has severe obstructive apnea and had 48 episodes of his Oxygen saturation dropping per hour. Surgery was moved forward and we head into the hospital tomorrow. We expect our stay to be at least a week.

I'm not sure if news like this will get easier over time. We had been feeling that things were going very well and had started to relax a little bit. Maybe we let our guard down but, for me, getting the news that this disease was still progressing was very hard...like reality was setting in again and I wasn't ready for it. I just want everything to be fine, perfect, for our son and it's moments like this that remind us how difficult it will continue to be as we fight to save our son. I've been trying to remember what my friend told me during our last crisis - "Everything always works out in the end. And if it doesn't, then it's not the end."

But for some reason, I'm more nervous about this surgery than I have been about any of the other ones. Perhaps it's because I know that his airway is in such poor condition and that him being put to sleep will be a lot of stress on his body, or perhaps it's because I've had a bit longer to wait before the surgery actually takes place. Either way, I'm nervous and just want Tuesday to come and go without incident. After that, all hopes are that his hearing will improve with the tubes in, and that his breathing will normalize with his tonsils and adenoids out.

Anyhow, we've decided to head out to the John Mayer concert in Toronto on Monday night to celebrate my birthday and to give Isaac a fun experience before his week in the hospital. John Mayer is Isaac's FAVOURITE singer and, lately, everything he's been doing has been John Mayer related. As I type away, he and Gabriel are dancing around and giving their own John Mayer concert, watching the new Mayer DVD as they do so. The picture to the left is Isaac having his "John Mayer Picnic" while he eats his dinner (I know...dinner in front of the TV...sorry!) But he couldn't tear himself away from the DVD in order to eat supper last night, so we all decided to camp out and watch together. Isaac and Gabriel danced and sung all the songs. It was a precious moment, and one I'm glad we all shared as a family.

I've been trying to arrange a Meet and Greet for Isaac, unfortunately without much success. But seeing Mayer on stage will be exciting for him and will hopefully start our week off on a good note. Below is a video that Isaac recorded for John Mayer while we were getting ready for the sleep study. You never know who's watching!

Not sure when we'll get a chance to update again, but we'll try sooner rather than later.

Best,

The Isaac Foundation

RUN FOR ISAAC! An Incredible Success

2008-06-05T17:00:00.013-04:00

Hi Everyone!

Wow, it's been a very busy few weeks for us. Things got off to a great start in Ottawa, with us setting up our booth for the Pfizer Health and Fitness Expo. This Expo is an incredible experience to be involved with. Close to 30,000 people travel through the expo, with most of the traffic taking place on Friday night and all day Saturday. It gave us a great opportunity to meet people, talk about Isaac, his disease, and our hope for a cure. It was also nice to have a location for our running team to meet at, drop off pledges, and receive their running shirt.

This is the second year that we have been a part of the Expo, and while I'm there, I'm always hesitant to decide if it's worthwhile or not. Giving up all that time to stand around is difficult, but by the time Saturday evening had rolled around, I was sure that the time and effort was worth it. The people we talked to were so supportive of our search for a cure. We signed up more runners for next year's event, and we were able to spread awareness of this disease to large amounts of people. But most importantly for me, it kept the whole idea of The Isaac Foundation at the forefront of my life.

When you are immersed in something, it's easy to forget the true goal that you are seeking to achieve; it's easy for everything to simply become a process, or an event, or about the bottom line. Speaking with the people that stopped by my booth, the parents, the grandparents, the newlyweds, and the expecting mothers, I was reminded that the whole reason I was there was for my son. I was reminded how personal and how close The Isaac Foundation is to my heart, how important the time I was putting in is if I'm going to help him beat this disease. I felt a true sense of appreciation to my visitors as we shared laughter and tears, all within the span of, at most, 5 minutes.

It was this reinvigoration that got me through the rest of the weekend. While the Expo is a drain emotionally, I still hadn't started on what would drain me physically! Ellen and I had been planning on running the 1/2 marathon together, which we also did last year. But the week before, a group of my grade 8 students decided that they wanted to run the race as well. So I agreed to organize a ride for them (thank you Brenda!) and have them join me at the race. I also agreed to run the 5km with them, which would mean I'd be running the 5 km and the 1/2 marathon, all in the space of 16 hours!

The kids came up and had a great race. As did the entire team that we were blessed to have take part in our event. And everyone participated in the event for different reasons, but they all had the same goal - helping to find a cure for Isaac. Isaac's Great-Grandmother, a young 88 year's old, came out and walked the 5km event with other family members. Isaac's grandparrents, his Nanny and his Poppa, walked the 1/2 marathon, and his Aunt, Uncle, and cousins all ran in a race as well.

I was also fortunate to have a large team come down from The Limestone District School Board in Kingston to support us. Not only did this group include my grade 8 students, it included teachers from the board as well. It felt so great to have their support! And one teacher, Jean Paquin, even qualified for the Boston Marathon with her time!!

One of the runners that truly touched me was Sarah. A few months prior to the run, Isaac had such a terrible ear-infection that we had to get him to the hospital in the middle of the night. We rolled in at 3:00 a.m., Isaac being his happy-old-self, me being the basket-case, worry-wart that I am. Sarah was the person checking patient's in that night, and Isaac and her bonded immediately. We left in short order and headed back to bed. A few days later we checked Isaac's guestbook and found the following entry:

"I was working at CHEO on the morning of Saturday December 8th. I work in the Registration Booth in the emergency dept.Issac was such a ray of sunshine in my day. It was my 3rd overnight shift and I was extremely tired!!! He has a sweet little smile and a great personality. You must be sooo proud of Isaac. Such a brave little boy. I would like to participate in some fundraising!! Good luck to the whole family."

Flash forward to April and we received Sarah's registration to be a part of our team. Like everyone else, she worked hard, trained, gathered pledges, took time from work and took some time from her busy schedule to support us.

We truly appreciate everyone for their dedication to helping us find a cure. In total, we raised close to $9,000 at the Ottawa Race Weekend. But just as importantly, we met some great people, advocated for our son, and got closer to the cure we are seeking.

Best,

The Isaac Foundation

Busy Times are Good Times (I think...)

2008-05-20T20:29:00.002-04:00

Hi All,

Sorry it has taken so long for us to send an update, things have been crazy!

Although this will probably be a brief update, I'll do what I can to update you on how things are going.

First off, Isaac is doing amazingly well! We couldn't be happier with his progress since our last update in November, which seems so long ago now. At that time, we made the difficult decision to avoid putting Isaac in a back brace for 23 hours a day for the next 14 years. While it was hard to choose between what was being said by doctors was best for Isaac and his quality of life, we're thrilled that we made the decision we made.

Isaac had his 6 month update a few weeks ago and it's been discovered that his back is stable and, in fact, getting a bit better. As well, his heart continues to be stable, his eyes have not worsened, and his joints appear less stiff. All wonderful news for us!

We are in the midst of planning our Celebrity Golf Tournament and our RUN FOR ISAAC! event at the National Capital Race. I'll be sure to send an update after our team takes part in the event this weekend.

Kids are just walking through the door from a long day at Sick Kids' so must go!

Warmest,

The Isaac Foundation

Global Television News Special

2007-11-08T21:05:00.000-05:00

Hi Everyone,
I know it's a bit late but I just got the digital version of the following news specials saved to my computer and ready to upload.

Below you will find the Two-Part Global News Special on Andrew Lanese and Isaac. Please take the time to share with everyone you know. Andrew's story is quite touching and we are praying they get treatment soon. His story appears first. Most of you already know Isaac's story. Isaac's story appears second. The clips are very emotional when you see them one after the other.

Warmest,
A.

CHEX News Clip - CUTS FOR ISAAC!

2007-11-04T23:31:00.000-05:00

As promised, the CHEX news clip from the event is below.
Enjoy,
The Isaac Foundation

CUTS FOR ISAAC! Raises over $2,000!

2007-11-04T21:13:00.001-05:00

Hey Folks,

Just a quick update on today's event.

Thanks to the incredible effort of Jennifer McGuire at Styles by Jennifer, and the wonderful people at BoPeek Salon, the 1st CUTS FOR ISAAC! event raised over $2,000 for The Isaac Foundation.

The event was an amazing success. There were many local firefighters on hand to wash hair, which was hilarious (and wonderful!).

Isaac will be on CHEX news tonight at 11:00 (Channel 217 on Bell Express-vu) and tomorrow at 6:00 p.m.

The above picture is Jennifer McGuire, the organizer of the event. Below is Isaac and Sparky the Dog.

We'll update more tomorrow.

Warmest,

The Isaac Foundation

Isaac's Latest News Article

2007-11-02T22:58:00.000-04:00

Hey Everyone,
Attached is the latest news article on Isaac. It appeared in the most recent edition of the Community Press. We'll try to update after our even on Sunday.

Warmest,
The Isaac Foundation

McFadyen Family Photo Gallery

2007-10-29T19:04:00.000-04:00

Hi Folks,
Just a quick post today. I've been noticing a lot of visitors stopping by our Family Gallery that is part of our main site and thought I'd update things with some current pictures. The gallery can be found at www.theisaacfoundation.com/gallery. But you can also watch the video below. For the record, the quality of the video is a bit better from our site.

Warmest,
The Isaac Foundation

Back Brace and, Support Us Through United Way

2007-10-27T11:56:00.000-04:00

"Everything always works out in the end. And if it doesn't, then it's not the end."

Hi Everyone,

Well, what can I say? What a week. A long, and difficult week. On Tuesday, we arrived at Sick Kids' for our "routine" appointment with the Orthopaedic Specialist to check on Isaac's back. We learned, very surprisingly, that Isaac's Kyphosis, or curvature of the spine, now requires him to be in a brace. And not just a regular back brace. This brace would cover him from neck to waist, front and back, and is a hard-plastic brace. It would prevent him from bending or twisting and would be required to be worn for 23 hours/day for many years.

We were quickly sent downstairs to have the mould made for his brace. Isaac was a trooper as they covered his entire body with plaster to make the mould. Being in a full-body cast certainly didn't take away his sense of humour! But, It was a very upsetting moment and day for us.

We had many conflicting emotions and wondered how we could possibly do this to our boy? How would this affect his quality of life? If he already has a shortened life-span, is this the best course of action? I want my child to have the happiest years that he can, and putting him in a hard-shelled, itchy, hot, and uncomfortable brace for the rest of his life doesn't seem to be something that is going to make him happy. And how will kids at school treat him? And strangers? Will this automatically change the person that he is?

During the last few, difficult days, I sent many emails back and forth to a writer-friend of mine. I told him that I was scared, which I truly am. He asked me what I was afraid of and my response was that I was afraid to live my life without my son. He responded very quickly and very simply. But his response picked me up and gave me the bit of strength that I needed to figure things out. He wrote "Don't worry. Everything always works out in the end. And if it doesn't, then it's not the end."

Anyhow, since Tuesday, we've been doing some digging, talking to other doctors, and doing a lot of research about this. Basically, we've realized that this course of treatment might not be the most effective.

After a long week, we have decided to wait 6 months and re-evaluate the situation at that time and we just received an email from our Dr. supporting our decision. You can never go wrong by putting things off. We'll see just how true this turns out to be in April. Thank you to everyone that has offered your support and words of wisdom.

On another note, as United Way donation time kicks into full gear, I just wanted to let perspective donors know that they can request that their UW donation go to The Isaac Foundation.

Simply write our charitable number in the "other charity" portion of your donation form and your donation will make it to our organization, through the United Way. There have been many generous people and organizations taking this approach and we truly appreciate it.

Our charitable number is 8069 300 79 RR0001.

I hope everyone is well. Please check out our website for our latest fundraising event, "Cuts For Isaac!" You can now order The Isaac Foundation Apparel from our website as well.

Warmest,
The Isaac Foundation

Open Letter To Kitchener-Waterloo Electorate

2007-10-15T19:28:00.001-04:00

I know, I know...the election is already over! I thought I'd take a second and quickly upload a letter I wrote to the newspapers in the Kitchener-Waterloo region in support of our friend, Elizabeth Witmer.

We have plans to update the website soon. Sorry for the continued delays...life is crazy lately!

Warmest,
The Isaac Foundation

Dear Editor,

I feel I must begin this letter by stating that I am an outsider. I do not live in the area and, truth be told, have never even visited your beautiful region. In fact, I live more than 3 hours away in the small town of Campbellford, Ontario. However, I have actively watching the political debates across Kitchener-Waterloo since the beginning of the election and feel I am very well qualified to comment on the merits of your incumbent MPP, Elizabeth Witmer.

It has been a very long two years for my family, beginning with the devastating news that my first-born son, Isaac, was sick with a terminal illness called MPS VI. This disease is so rare that there are only 3 known cases in Canada and less than 1000 worldwide. Symptoms include a severely reduced lifespan, stiffening of the joints, mainly the knees, arms, and hands, corneal cloudning, spinal cord compression, and heart and airway disease. Upon initial diagnosis we learned that a life-saving treatment existed in the US but cost almost 1 million dollars per year.

In the beginning, all we had was Hope and, to be honest, we didn’t have much of that either. Having to deal Isaac’s initial diagnosis while continuing to lead our everyday life was a struggle that I do not wish on any parent. Moreover, struggling to understand our political system and secure provincial funding to save our son by searching for help from our local politicians was a stress that was almost unbearable.

The lessons I learned along the way to finding help for my son are vast. I learned that hard work and determination are sometimes not enough if the decision makers choose not to listen. I learned that political will is most often dictated by public pressure than by good policy. And I learned that “compassion” is a word more often quoted than actually experienced.

But Ms. Witmer unselfishly came along and took up our cause. She gave us Hope at the very moment when all seemed lost; and she gave us faith. I will forever remember our first meeting, sitting in her office at the Ontario Legislature. She listened to my plea for help with tears in her eyes and she told me that she was a parent too and that she was going to do everything in her power to help my son. That fateful encounter saved my son’s life and I can never thank her properly for what she has done.

Elizabeth’s determined work in the Legislature has allowed our family to Hope again for the future. While the Liberals did nothing to show their support for Isaac, and while the Liberals showed no remorse for our family situation, Elizabeth Witmer came to the rescue. She continued to push for our cause, knowing that waiting or doing nothing was going to drastically shorten my son’s life. Because of her relentless efforts in the Legislature, the Liberal government agreed to fund the treatment that my son so desperately needed to save his life.

Her kind, caring, and compassionate work changed public policy; something that I was continually told could never be done. Elizabeth changed my belief in the political system and showed me that it is possible for our elected representatives to make a difference in the lives of the people they represent. And that’s the very point I’m trying to highlight. Elizabeth Witmer is not even my elected representative! I had already approached my two area MPP’s, John Gerretsen and Lou Rinaldi, both Liberals. The only thing that came my way from them was delay after delay. Knowing that time was precious for my young son, I reached out to Elizabeth for the help and support that I needed. I researched her track record and realized that she had already worked tirelessly to gain funding for treatment for people affected by Fabry’s disease. Elizabeth came to the rescue of those individuals and she came to the rescue for our son.

Our family is indebted to Elizabeth for what she has done for us. She has changed our lives immeasurably and has given Isaac hope for the future. That's all any parent can ask for - Hope for their children's future. Although we can never repay her for her kindness and support, I hope that she’ll be available for us to send her a card when Isaac graduates from highschool. And I hope she’ll be around for us to send her Isaac's wedding photo, and the announcement of the birth of his first child. And I truly hope she’ll be available to speak at our celebration party when we make the announcement that we've found a cure for this horrible disease. No matter what the future holds, we have one for our son thanks to Elizabeth Witmer.

I am a Liberal but I believe that elections should be about the local people running for office in each of the ridings across this Province. As the election steams into its final week, I hope the readers in your area take the time to realize how truly wonderful their local representative, Elizabeth Witmer, has been for them over the past 17 years and reward her with another victory come Election Night.

Attached is a photo of Isaac, a photo that speaks volumes about what Elizabeth has done for him. It was taken during his first soccer game, a game that we weren’t sure would ever take place. It shows Isaac in his uniform, laughing to one of his new friends as he comes off the field for a break. Please remember that your local MPP played a big role in him being able to play soccer and, ultimately, live the normal life he deserves to have.

Warmest Regards,

Andrew McFadyen
613-328-9136
www.theisaacfoundation.com

Golf, A Relaxing Break, and Baseball...

2007-08-02T18:20:00.001-04:00

Hello, Hello!

Our long awaited update is now underway. Sorry it's been so long. After working so hard on the golf tournament, we decided that it would be best to take a bit of time off and recuperate and relax a little bit before we get going again.

Our 2nd Annual Celebrity Golf Tournament was another great success for our Foundation. The tournament was a bit smaller than last year due to us putting most of our efforts on the RUN FOR ISAAC! event prior to the tournament taking place, but we still managed to raise over $12,000 for our Foundation.

Ellen did a great job setting up the silent auction, which was a nice addition to the tournament. We were thrilled to welcome Rob Baker from the Tragically Hip and The Honourable Peter Milliken, Speaker of the House of Commons. We are truly grateful for their support of Isaac and our Foundation.

Following the Golf tournament, Ellen and I took a bit of time off. Of course, we couldn't go far due to having to be at Sick Kids' ever Tuesday for Isaac's treatment, but we did manage to escape to Niagara-on-the-Lake for a 2 day Golf Holiday.

As things were in full swing for the Golf tournament, my sister Alesha McCabe was working tirelessly with her committee to organize a Baseball Tournament to support The Isaac Foundation. She began planning way back in January for the event, which just took place this past weekend.

And What a job she did! I was so proud of her! Numbers are just rolling in, but she managed to raise close to $6000 with her hard work and determination. Isaac, Ellen, Gabriel, and I had a great time being a part of the tournament and it was amazing to meet such kind, caring, and considerate people.

Two teams brought in extra pledges with their registrations and we truly thank them for their support. Isaac made a lot of new friends and he's pictured here with just a few of them.

In the photo on the right, Isaac is sitting with Chuck the DJ! During the pre-dance preparations, Isaac and Chuck struck up a friendship that lasted the whole night through! Chuck was so kind and patient to Isaac and showed him how to use all of the mixing equipment. Isaac sang into the microphone to his favourite John Mayer songs while Chuck and his friends helped him change songs, turn the volume up and down, and generally have a good time.

We'll try to update again soon. Just thought I'd send a quick entry with some news while I got the chance.

Again, thanks to everyone that participated int he Golf Tournament and the Baseball Tournament. Please know that all dollars raised goes directly towards research and that your efforts will get us closer to finding a cure for Isaac.

Warmest,

The Isaac Foundation

CKWS News Clip

2007-06-13T21:23:00.000-04:00

As promised, here's the video of Isaac's latest news appearance. It should be active soon (sometimes Youtube takes longer than expected). If the clip doesn't work just try again a bit later and it should be active.

Warmest,
The Isaac Foundation

Isaac's First Soccer Game, More Civitan Support, and Celebrity Golf...

2007-06-10T21:01:00.000-04:00

Hi Everyone,

Seems like I say this everytime I'm updating the website and blog, but it's been very busy around the McFadyen household over the past week or so. But it's been a good busy, as always!

Isaac started his first soccer game last Tuesday and was adorable! He wasn't interested in playing soccer at all, but that wasn't a surprise to us. He'd been telling us that he "just wanted to to watch" and not play.

Well, that's just what he did! Actually, he has found a new best friend in his coach, Rob. Isaac figured out that his coach was the guy in the "red hat" and proceeded to follow him around for the entire game. In fact, we don't really have any pictures of Isaac's first soccer game that Rob isn't a part of! The photo above illustrates how the game went, for both Isaac and Rob.

It was an incredible feeling, watching our son out there with other kids, being part of his first team. And we didn't have to worry about him being different from other kids. We didn't have to worry about the fact that he was the smallest kid on the field. We didn't have to worry about people looking at him as being special in any way at all. And it was nice that his coach, Rob, seemed to enjoy his company as much as Isaac did his. Rob is the first person in Isaac's life, outside of his friends and family, that has the potential to have a lasting impression on him. And hopefully there will be many more like him in the future. More coaches, school teachers, custodians that will have an impact on his life and help guide him through his day to day activities. What a great feeling that is for any parent.

Guess it should be said that Isaac did get a chance to play goal near the end of the game. Of course, Rob had to take him down there and show him how, but he did it and played the rest of the game in goal! And we're lucky that Isaac gets to play on the same team as his friend, Evan, who is pictured below. Both of them love to socialize, so Tuesday nights will be a great time for them to visit each other...

On Thursday, Ellen, Isaac, Gabriel, and I were back in Kingston for another cheque presentation from the Civitan Clubs. After my first presentation to the organization, I was asked to speak at their East Region Convention, which I was very happy to do so. The audience was so kind and caring, and they received my presentation and our Foundation very well. Each club went back to their membership and asked for donations which resulted in the cheque presentation on Thursday. In total, we were given $6800 from Civitan members, an amount that is very generous, heartfelt, and heart-warming.

The media were there to record the event for the Kingston news and we had the opportunity to be interviewed afterwards. We still haven't seen the final result but I should have access to a copy in the near future. We'll upload the news clip once we get the opportunity.

We want to take this chance to thank the CIVITAN members for their tremendous support and encouragement over the past few months. Their organization truly makes a difference in the communities they serve and we are so fortunate to have had the opportunity to be supported by them. They will play a big role in our finding a cure for Isaac and I look forward to having Civitan members celebrate with us once we realize our goal.

As far as the golf tournament goes, we're still working away at getting silent-auction items donated, teams signed up, and doing everything involved with organizing a successful tournament. Rob Baker of the Tragically Hip will be joining us at the event, as will Peter Milliken, the Speaker of the House of Commons. And of course, Isaac and Gabriel will be on hand to welcome all the golfers to the event and will be travelling from team to team during the day to visit with them, shoot photos and, possibly, putt one in for each team!

If you're interested in joining us for the day, please let us know via email. We'd love to have you attend!

Guess that's it for now.

The Isaac Foundation

Successful Run, Heart News, Don Cherry, and Golf...

2007-06-01T10:47:00.000-04:00

Hi All,

Well, it's been a very busy and successful week or two for The Isaac Foundation. Our RUN FOR ISAAC! event at the National Capital Race went very well. Because of our status as a Destination Charity for the event, we received a booth at the Pfizer Health and Fitness Expo. It was a great opportunity to meet people and inform them about Isaac, his disease, and our Foundation because over 30,000 people go through the Expo ever year. We sold a lot of our Isaac Foundation Apparel and took donations from the public to support our run. It was a great event to be a part of and we Thank the organizers for making it such a successful expo.

Race Weekend was truly awesome! Our Run For Isaac! team did very well, some posting personal bests for their times, some running in the full marathon for the first time, some (including me!) running the 1/2 for the first time, and some running for the first time period!

It was an incredible commitment for our runners to make and we truly thank them for their efforts! Everyone worked hard to canvass for pledges, promote our foundation and, of course, train for their races. My family drove the 6 1/2 hours for the trip, ran in the race, helped out at the booth, looked after Isaac and Gabriel while Ellen and I raced, and didn't complain the whole time!

It was really nice to be able to meet new people and bring together a group that cares truly and deeply about our son. They want to make a difference in his life, and the life of others affected by this disease, and it was overwhelming to have their support. Runners that came out will now be life-long friends and we look forward to getting to know everyone well over the coming years.

Initial figures suggest that we made close to $10,000 for the Foundation, money that will go directly towards funding innovative research projects that aim to cure this disease. Thank you to everyone for their tremendous effort!

After we returned from Race weekend, Isaac had treatment on Tuesday and an appointment with the Cardiologist on Wednesday, both at Sick Kids' in Toronto. Treatment went well and we learned that Isaac grew another cm. To most this isn't big news, for our family this is incredible!

The cardiologist told us that Isaac's ventricle is still enlarged, and more so than last time we were there. This happens because of his heart-valve prolapse and the blood shoots back into his ventricle as it moves through his heart. In an effort to control the enlargement, Isaac has now been placed on blood pressure medication. Ideally, this prevents the ventricle from growing. We'll update more on this when we know more.

One of the apparel items that we had made up in addition to our hats, t-shirts, hoodies, and golf shirts, is a hockey jersey. And they look incredible!! I wore it to school one day (a crazy, hot day no doubt) and it was a huge hit. A friend of mine suggested that we make one up for Don Cherry and send it along to see if he can wear it on Coach's Corner. So we did! And it looks great. We put his name on the back and gave him Bobby Orr's #4. Now we're just working on getting it out to him in time for the Cup finals in Ottawa. We've been working away at this idea now for a while and we're hopeful that he'll be able to wear it. Pictures of the jersey for Don are posted below the rest of the pictures of the runners (speaking of photos of runners...sorry we didn't get a shot of everyone. I hope it's understandable! We' had so many runners, not enough time to shoot everyone!) If you have photos of the event, please send them along and I'll try to put a photo album together for everyone and upload it to the main site.

Finally, we're madly working towards our 2nd annual Celebrity Golf tournament. The event takes place on June 23rd at the Inverary Golf Club near Kingston, Ontario. Cost is $500 per team, which will include a $75 charitable receipt, golf, cart, lunch, dinner, and prizes for each participant. Please send us an email if you'd like to register your team as spots are filling up fast!

As promised...here's the Hockey Jersey for Don Cherry! Hopefully he's interested in wearing it. We've got a lot going for us! They're Bruin's colours, Bobby Orr's number is on the back, The charity is for a little boy, We're from KINGSTON!, and they really are beautiful shirts. GO DON!

Guess that's it for now. We'll try to update again soon.
Warmest,
The Isaac Foundation

Civitan Support, Isaac's Update, and Busy Times...

2007-05-15T10:44:00.000-04:00

Hi Everyone,

As usual, things have been incredibly hectic around home. We're both very busy working on Foundation events, planning for the National Capital Race in Ottawa, looking for sponsors for the Celebrity Golf Tournament in June, updating websites, emailing families, and delivering presentations on behalf of the Foundation to different organizations.

One such organization that we've been delivering presentations to is the Civitan. Our journey with Civitan began a few months ago when a Civitan Club member in Kingston heard an interview I did on the radio. She asked me to attend the Kingston Civitan meeting to talk about Isaac, his disease, and our Foundation. The assembled crowd was wonderful, and they received my message with empathy and tremendous support. From there, we were asked to present to the Eastern Region Convention in Arnprior, where clubs from Eastern Ontario and Quebec sent representatives. Again, I was overwhelmed by the support we received from the members and we thank them from the bottom of our hearts for their words of encouragement and their vow to inform people about rare diseases, such as the one that Isaac is suffering from.

A highlight from the Civitan Convention came when one member, Bill MacAdoo, sacrificed his body to support our cause. He took donations from the assembled group in exchange for waxing his body! To top it off, he got a piercing as well!!! We truly appreciate his support and want him to know that his efforts haven't gone unrecognized. Please CLICK HERE to hear a message of Thanks from Isaac for Bill's selfless act. And CLICK HERE for a quick news article about the event.

The RUN FOR ISAAC! event is quickly approaching and we're working on ordering clothing to sell at our booth at the Pfizer Health and Fitness Expo. So far, we've ordered some Orange Hoodies, more hats and T-Shirts, some kids hoodies, and some spring/fall jackets. In addition, some Hockey Jersey's are being made for us as well. Of course, all of these items are available for interested purchasers. We'll do our best to get some photos of the items up as soon as we receive them.

As far as Isaac's health update goes, we got some good news regarding the kyphosis in his spine...it's not as bad as had previously been reported. We're quite relieved about this and will continue to monitor him closely. But his heart murmur is getting worse, and we're concerned that his growth hasn't continued to speed along as it did at the beginning of his treatments. Again, this will all be monitored and we'll update more as soon as we have details.

The Celebrity Golf Tournament is in full swing and we're actively searching for silent auction items and signing teams up. A registration link will be posted soon, as will details for the event. What has been set is the date...JUNE 23rd at the Inverary Golf Club near Kingston, Ontario. Let us know if you want to be part of the event ASAP because spots are already filling up fast.

That's it for now. We'll try and update again soon.

See you in Ottawa!

The Isaac Foundation

Updates, More Media, a Wonderful Concert, and Busy Times...

2007-04-27T21:50:00.000-04:00

Well, time for a long awaited update on how things are going. We've been incredibly busy. Working all day, doing Foundation business, planning events, travelling to and from Toronto for treatment, and doing the small things in life have really been exhausting us of late. We never seem to find the time to return email or telephone calls. And when we do, they keep coming!

Our Application deadline is quickly approaching and we've received some grant requests already. We're looking to give out a two year grant in the range of $80,000 - $100,000 and can't wait to get the process of reviewing applications started. It feels good to be able to be part of finding a cure for Isaac and other children affected with this disease. We'll keep working to put more money into innovative projects. We know this will make a difference in Isaac's life. A few years of exhaustion is a small price to pay.

Isaac appeared in two newspaper articles last week, both of which are available in our Media section of the website. They were fairly well done and it's nice to continue to get media interested in our cause. You never know who's watching...

We got Isaac's MRI results back. They were looking at his spinal cord compression and the results of the decompression surgery he had last April. Things are great as far as the compression goes, but unfortunately his kyphosis (curvature of the spine) is getting worse. And ERT doesn't help with skeletal problems associated with this disease. It was a tough few days when we found out that it's getting worse because it brings us back to reality quickly. It's easy to know that treatment is helping Isaac's symptoms but we have to remember that ERT is not a cure and we must find better treatment options soon.

We'll be sent to see an Orthopaedic Specialist to track the changes in his spine. In the near future, Isaac might have to wear a back brace. In the coming years, it might mean implanting some rods in his back to stabilize his spine. Not something we're looking forward to for him, obviously.

And Isaac will be receiving a dosage increase for his ERT beginning next week. Hooray! This means he's gaining weight and needs a higher concentration of the enzyme his blood is lacking. Hopefully this will lead to another growth spurt.

Planning for the Race Weekend in Ottawa is going well. Our team is growing and we're hoping to raise a lot of money through the event. Check out the Events link for more info. While we're writing about events, we want to thank Kim Duca for organizing and performing at a wonderful Benefit Concert for Isaac that took place in Kingston on April 22nd. It was a beautiful night, with some great performers giving their time for our cause. And thanks to everyone that attended, we truly enjoyed ourselves.

Our golf tournament has been scheduled for June 23rd and there has already been intense interest from teams. If you know that your team would like a spot in this year's tournament, please email us ASAP so we can reserve a spot for you. Cost is $500 again, which includes golf, carts, and dinner for a team of 4. We will again be holding a silent auction and all golfers will receive a prize package at the event.

On a last note, check out our FACEBOOK group, if you're on the ever-addicting networking site.

That's it for now. We'll try to update again very soon.

Take Care,

The Isaac Foundation

NIH Conference Recap

2007-03-16T18:57:00.000-04:00

I have now returned from the NIH sponsored Scientific Conference on MPS Diseases in Washington, DC. It was definitely worth the travel (9 + hrs. each way) and out-of-pocket expense.

I was a little intimidated as I attended the evening reception the night prior to the two day conference. The room was filled with highly educated researchers and doctors, and a handful of parents that I had never met. But by the time I left that evening, I had spoken at length with two of the leading MPS researchers in the world. These researchers are the equivalent to any celebrity in my mind…I’ve been reading about their work since the day Isaac was diagnosed. I had the opportunity to ask them about their research specific to MPS VI, and discuss our foundation and first grant. I was totally amazed. And the conference hadn’t even begun!

So the next two days were filled with presentations and discussions by the leading researchers and medical doctors from all over the world. Each of the researchers presented their current work, much of which hasn’t been published yet. Then the other scientists asked questions, provided suggestions and occasionally criticism. It was all very interesting, and very impressive. The amount of intelligence in that room was exhausting, and it took every ounce of concentration to try to follow along. (Notice I say try).

Some of the highlights included a presentation by Dr. Fran Platt, which partly focused on the secondary problem of inflammation with lysosomal storage diseases. She found that mice who were given NSAIDS (non steroidal anti inflammatory drugs) and Vitamins E and C (antioxidants) lived significantly longer than those with no treatment. This wasn’t specific to MPS VI, but there is growing evidence that an immune response contributes to some of the pathological problems with MPS diseases, and therefore this treatment should prove of benefit in combination with other therapies. Further studies are needed, but at least in the interim we look into geting Isaac on some NSAIDS and vitamins. You can read one of her papers on the subject here.

I also learned that Dr. Hopwood is beginning clinical trials in Australia injecting ERT into the hip joints of patients with MPS VI. The idea is that it should help get the enzyme into the bone and joint more effectively than intravenous ERT, which due to the limited blood supply to the bones doesn’t help much with bone problems. Dr. Hopwood also had a paper about to be published which analyzes the blood, urine and gene mutation of MPS VI patients, and predicts the clinical course of disease progression. This is the first of its kind, and I’m anxious to get my hands on it in the coming months. (We also expect to get the results of Isaac’s gene mutation analysis back from Australia in April.)

There were numerous presentations on gene therapy, mostly with animal models, using a variety of vectors and techniques. Some are further along than others, and it looks like there may be a clinical trial underway for MPS III as early as 2008 in Europe.

Overall, the conference was so encouraging. Not only did I get to meet all of these researchers and doctors face to face, hand out our Request for Applications for our first grant in person, and learn about the progress being made that will hopefully one day save our son – but it was also so promising to see these doctors collaborating, sharing information and advice, advancing the field of MPS diseases and treatments. It reaffirms my belief that one day we will have more options for treatment for Isaac, that he will be able to lead a much longer and better quality of life than most had initially thought possible.

A Long-Awaited Update...

2007-02-17T21:14:00.000-05:00

Hi All,

Sorry it's taken so long to update our blog. We've been swamped with planning for the National Capital Race, Preliminary planning for The 2nd Annual Isaac Foundation Golf Tournament, work, and life in general!

Race Weekend preparations are going very well. We have a lot of people that will be running the race for us and we are confident that we'll reach our goal of $20,000. We'll update more soon but if you know of any runners or walkers that would like to participate in any of the races to support The Isaac Foundation, send them our way ASAP.

Since our last update, Isaac has grown another 1/2 inch, which puts his total growth at 2 1/2 inches since ERT began. It's incredible to know that his treatment is working. Trips to Toronto are becoming a normal part of our lives and we're grateful that Ellen's mother, Paula, can make the trips with us on a weekly basis.

Also since our last post, we received a comment on one of our blog entries about BioMarin, the drug company that makes the treatment that Isaac receives. We have often talked about how frustrating it was to try to deal with this company, and about their unwillingness to work with families and provide support when we need it most. The comment we receieved was basically defending the drug company for their actions (or inaction, in our view) because BioMarin is a small organization and just beginning to make money.

I don't find this to be a valid point for a variety of reasons. A bit of work and support on their behalf would have had many positive reprocussions for the company and would have made our very difficult and painful journey easier to handle. But we were left alone to fight our battle for approval of the drug in Canada and we were left alone in our battle with the Provincial government for funding. In the end, BioMarin got what they wanted - their product in Canada without having to apply for approval (at a high cost to them) AND provincial funding for a lifetime supply of their product. And they didn't have to do any work! Sweet deal for them.

Of course, we would do it all over again of we were forced to. Our children are our life and we would fight forever for them. But again, a bit of help from BioMarin would have made our ordeal easier and it would have provided them with a warm news story to promote. And they could have felt good about their patient-friendly company and could have advertised how important working with families is to them. Too bad.

In the past week, we've had contact with two other families that are affected with MPS VI. One woman is in Belarus and is 30 years old. She's currently working on her PhD and still awaiting treatment. The other boy is 7 years old and is located in Portugal. He's also still awaiting ERT and we're thinking of them often. We hope their governments will begin to support them and help them get the treatment they so desperately need. It makes us feel fortunate that we live in Canada, where there is potential to change government policy.

Our friends in BC, the Purcell's, have also started treatment! Trey has had two treatments now, and they are getting some great media attention. Please stop by to visit them at www.treypurcell.com and sign the guestbook with your congratulations and support.

In March, Ellen and our Foundation treasurer, Lynn Gallupe, will be heading off to Washington for the NIH sponsored scientific conference on MPS Diseases. The top scientists and researchers in the world will be on hand to present their projects. It will be an opportunity for us to find out where the most promising research is being completed and give us an idea as to where we would like to direct our research dollars. It will also give us an opportunity to give some researchers information about our Foundation and about our grant application process.

We've just finished drafting our Request for Applications and will be sending it out to grant candidates soon. We hope to provide an $80,000 or $100,000 grant in the spring.

That's about all for now, although I'm sure there's more to update. Remember, if you know of any runners or walkers that would like to participate in the National Capital Race for The Isaac Foundation, send them our way ASAP!

The photo above was shot last month. It's Isaac with his brother Gabriel. They are so cute together!

The Isaac Foundation

RUN FOR ISAAC!

2007-01-20T20:34:00.000-05:00

Hi All,

Well, things have been going very well over the past few weeks. It was great to see Isaac's feature in the Globe and Mail again. In addition, we've got some great response from the article that appeared in the Kingston Life Magazine. We'll try to get the PDF files of that article to upload to the website.

We've just begun planning and advertising for The Isaac Foundation's "RUN FOR ISAAC" event at The National Capital Marathon. The event takes place on May 26th and 27th in Ottawa and we need a lot of runners and walkers to help us reach our fundraising goal!

You can walk or run the 5KM, 10KM, 1/2 or Full Marathon and canvass for pledges to The Isaac Foundation. If you know somebody that is already planning on attending, send them the link to our website and tell them about our cause.

More information can be found on the main site (www.theisaacfoundation.com). Pledge forms are also available there as well.

That's it for now,

The Isaac Foundation

December 26th, Globe and Mail

2006-12-26T08:29:00.000-05:00

A costly second chance for little Isaac
With Ontario now funding an expensive new treatment, a two-year-old is flourishing despite his rare disease, LISA PRIEST writes

LISA PRIEST
TORONTO -- He's not even three years old, but the words pulse oximeter roll off Isaac McFadyen's tongue, as if they are second nature. He knows the device well; it clips onto his finger and measures the oxygen in his blood. It's one of several checks done each hour he undergoes treatment for his rare disease.

But Isaac's life is not one of suffering. It is that of a preschooler thriving after receiving one of the most expensive drugs in the world -- Naglazyme -- the only treatment for Maroteaux-Lamy syndrome, an inherited metabolic disorder.

The bag of colourless medicine, not even a cupful, costs the public health-care system $5,000 to $6,000 for each weekly treatment, something he will require, in some form or another, for the rest of his life.

In the three months he has undergone enzyme replacement therapy, Isaac's parents say they've witnessed dramatic physical changes. Isaac has grown two inches and his belly, once rotund due to an enlarged spleen and liver, has shrunk by three inches.

"For us, the idea that he has a chance at a future, is more than we ever had before," Isaac's father, Andrew McFadyen, said.

During his 14th infusion in early December, Isaac, a high-spirited boy, rode a plastic tricycle in the corridors of Toronto's Hospital for Sick Children, as his mother, Ellen Buck-McFadyen hurried along with him, clutching the intravenous pole that carried his medicine.

A few months ago, the future looked bleak for Isaac, who has mucopolysaccharidosis type VI, or MPS VI for short, a disease so rare it's estimated that only three to 10 Canadians have it.
In May, his family faced moving to England where the drug is funded by government -- at the cost of $300,000 to $1-million annually -- or watch Isaac be ravaged by the inherited metabolic disorder.

He had already suffered some of the ill effects of the disease: a piece of his skull and a portion of vertebrae in his neck were removed after they began compressing his spinal cord. His corneas were clouding, his forehead protruded and he had an umbilical hernia.

"We were really close to moving," said Mr. McFadyen, who was eligible for British citizenship through his Welsh mother. "We had our application filled out and all set to go."

When Isaac's plight was profiled in The Globe and Mail in May as part of a broader piece on the lack of an organ drug policy in Canada, the story drew swift reaction, with the subject being raised twice in the Ontario Legislation by the opposition.

In July, the provincial government decided to fund the drug for Isaac after a clinical review by members of Ontario's inherited-metabolic-diseases program.

"This is not a cure but neither is insulin a cure for diabetes," said Joe Clarke, senior associate scientist in the Hospital for Sick Children's Research Institute, who has treated Isaac. "We're hoping that it will correct the metabolic abnormalities sufficiently so that the disease won't progress."

In developed countries, there are an estimated 1,100 sufferers, virtually all of whom will experience severe disability and shortened life spans. That's because those with MPS VI are missing an enzyme called arylsulfatase B, needed to break down carbohydrates known as glycosaminoglycans. The carbohydrate builds up in the body's cells and affects multiple organs.
Signs of the disease include stunted growth, enlarged tonsils and adenoids that cause breathing problems, poor mobility and dramatic changes in facial features, including a flat nose and large head. In their teens, sufferers often require heart-valve surgery.

"Isaac is the youngest patient I've ever seen with the condition, so we have to consider him to be programmed to have more severe disease," Dr. Clarke said. "The results we've achieved so far, I'm very, very happy with, ecstatic with it."

Although the drug won't necessarily reverse the damage the disease has already done, it will help halt its progression.

"If Isaac didn't get this drug, he was simply going to continue to progress where there would be very little in the quality of life for him," said Conservative health critic Elizabeth Witmer, who twice raised his plight in the legislature.

She is concerned about Canada's lack of an orphan drug policy, as is Durhane Wong-Rieger, president of the Canadian Organization for Rare Disorders.

"There is widespread agreement that we need to provide some treatment for rare disorders," Dr. Wong-Rieger said. "But there's no agreement on how we're going to provide the funding . . . There's some real urgency in terms of putting together a process to evaluate these drugs."
Since Isaac began receiving treatment in September, his life has turned around. The problems of today are much smaller than those of a few months ago: a traffic snarl as they make the two-hour drive to the hospital from their home in Campbellford or a puzzle piece that goes missing in the hospital playroom.

"It's such a huge relief," Ms. Buck-McFadyen said, holding her other son, 13-month-old Gabriel, at the hospital. "We know how fortunate we are."

Elizabeth Witmer - Politician, Mom, Life-Changer

2006-11-22T20:19:00.000-05:00

Well, Isaac's treatment this week was quite an adventure! It all began when Ellen took Gabriel into the doctor for his chicken pox vaccination on Monday. The doctor looked at Ellen and said that Gabriel currently had the chicken pox and he couldn't get the vaccine. Who knew that he had the chicken pox? In fact, he had 5 spots and they had just shown up that day.

So, this immediately posed a problem for Isaac's treatment. Ellen usually takes Isaac and Gabriel to the hospital with her mom. This way, Gabriel can still be with mom and Ellen and Isaac get a chance help while they are at the hospital. Plus, Gabe is still breastfed and won't take a bottle of EBM. With chicken pox, Gabe couldn't come to the hospital, which meant that I had to take the day off to take Isaac to treatment. And it's hard to take time off.

Anyhow, treatment went really well and I really enjoyed my time with Isaac at the hospital. Even when Ellen called me every 1/2 hour to give me a tip on how to do things while we were there! I made sure to take a lot of photos so I could document the complete day of treatment for my next blog update.

The best thing about the day, however, was the visit from Elizabeth Witmer (pictured with Isaac above) and her assistant, Erin Greatrix. Elizabeth is the MPP that really made treatment a reality for Isaac. She's an incredibly caring and compassionate person and truly believed in Isaac and our hope to get provincial funding for treatment. When Erin told her about Isaac, she agreed to meet with me almost immediately. She fully understood that we were running out of time to get Isaac started on treatment and moved immediately to confront the government about the lack of funding available to bring hope to Isaac.

While the Liberals did nothing to show their support for Isaac, and while the Liberals showed no remorse for our family situation, Elizabeth came to the rescue. She continued to push for our cause and brought Isaac up in the Legislature twice. And if we didn't want her to say something publicly about Isaac, she respected our wishes. And when we sent reporters her way, she made time for them over and over again.

Elizabeth showed how incredible she is is by taking the time to visit Isaac during one of his treatments. She cared how things were going. She immediately noticed all the changes in Isaac and recognized how important it was to see the how wonderful and life-saving this treatment truly is for Isaac. Moreso, she wanted to show that she appreciated the efforts that our family put towards saving our son. This is more than what George Smitherman has done and more than what our local MPP, Lou Rinaldi (another Liberal, BTW) has done.

Our family is indebted to Elizabeth for what she has done for us. She's changed our lives immeasurably and has given Isaac hope for the future. That's all any parent can ask for - Hope for their children's future. Although we can never repay her for her kindness and support, I hope that she'll be available for us to send her a card when Isaac graduates from highschool. And I hope she'll be around for us to send her Isaac's wedding photo, and the announcement of the birth of his first child. And I truly hope she'll be available to speak at our celebration party when we make the announcement that we've found a cure for this horrible disease. No matter what the future holds, we have one for our son thanks to Elizabeth.

Take Care,
The Isaac Foundation

DVD Now Available on YouTube

2006-11-11T20:14:00.000-05:00

We've uploaded our DVD, created by my brother Cameron, to the popular YouTube website. It's also streaming above. Please stop by the site to watch the video. As well, please send the link onto all of your friends and ask them to send it onto their friends. We want to get this video to as many people as possible.

The DVD contains about a 3 minute slideshow of Isaac and our family's photographs and then details information about Isaac, his disease, and our Foundation.

Biomarin, the drug company that I've spoken of that makes the ERT that Isaac receives on a weekly basis, still hasn't seen the DVD. Perhaps they'll watch it while on the site and garner an appreciation of the amount of time and effort and resources it took for us to get their product available and funded in Canada. Perhaps they'll realize how precious the children are that are affected by this terrible disease and they'll work hard to ensure that all children have access to the treatment, regardless of their country of origin or financial assistance status. Or perhaps, as I expect, they simply don't care unless there is an assurance they'll receive their financial dues.

Take Care,
The Isaac Foundation

Heart Prognosis and A Visit From Some Friends (well...Family)...

2006-11-08T21:01:00.000-05:00

Hello All,

We had our appointment at Sick Kids' today to track the heart murmur that's developed in Isaac. We found out that there is some thickening of Isaac's mitral valve and thickening in his aortic valve. Essencially, this is the build-up of GAG's that we've been expecting to take place.

Right now, there is not concern except for the fact that it will need to be watched continually for changes in the condition. As well, he'll have to have some heart meds before surgeries. The cardiology said that it's not severe right now but it's also not trivial.

The other minor concern, and something that we'll have to monitor as well, is the finding that the right ventricle chamber of his heart is 10% enlarged. The cardiologist assumes this is taking place because of the back flow into ventricle because of the problem with the mitral valve. If the chamber continues to become enlarged there will be more cause for concern.

Isaac did very well during his echocardiogram. The hospital was thinking that he might need t be sedated because the procedure takes about an hour for a full scan. Due to airway concerns, we decided not to use sedation and Isaac was awesome! He did the whole echo like a trooper and even helped his new friend, "Dr. Carlos." Carlos did a great job with Isaac and got things finished quickly. We were so proud!

The pictures attached are of Isaac's friend, Trey, who happens to be a child affected with MPS II, or Hunter's Syndrome. We met the family at the MPS conference in Collingwood in the summer. They are visiting us after a long and difficult trip to Duke University in North Carolina where they were having tests done that are to determine whether Trey needs a Cord Blood Transplant. They have stopped in to visit us for a few days before they head back to their home in BC.

Trey and Isaac play really well together and they love to spend time together. Trey's parents, Ryan and Deb, are wonderful people as well. We've only spent a few days together in total, but they already feel like close family members. They also have a little boy, Avery, that is Gabriel's age.

Ellen and I can't imagine the difficult times that Ryan and Deb are facing right now. The decision to have a Cord Blood Transplant can't be taken lightly because of the incredible risk involved. Please drop by their website (listed on the right) and send them some support by way of signing their guestbook. It's going to take a lot of hope, determination, and love to beat this disease and they need all the help they can get right now.

Finally, Elizabeth Witmer, our wonderful MPP that has changed the course of Isaac's life, is hoping to stop by to visit Isaac during one of his infusions. We can't wait to see her! She's a tremendous woman, incredibly compassionate and dedicated to her provincial constituents. She's truly made a difference for us and we can't think of how to thank her properly. We'll be sure to upload a photo of her with Isaac once we get to see her again.

Take Care,
The Isaac Foundation

Halloween, An Inspiring Group of Kids, and What Goes Up...

2006-11-05T09:27:00.000-05:00

Well, it's been a busy week, to say the least. Isaac and Gabriel spent Halloween at the hospital while Isaac got his treatment done. We made sure that we went out trick-or-treating the night before and visited Nanny and Poppa and Great-Granny and Great-Grandpa. The kids had a great time, and they were both so cute! There was a bit of trick-or-treating done at the hospital as well, which is great for the patients at the hospital. What a wonderful place...

We also heard some great news from our friends in Kansas regarding their son Holden and his quest for ERT. They heard at the end of the week that they do qualify for ERT for Holden and will begin soon. What a relief for the family! We fully remember getting the great news and how anxious we were to start. Please drop by their site (listed with our links on the right) and send them a quick note of support and congratulations.

While we're thrilled that Holden will be getting ERT, it really puts the drug company's (Biomarin) priorities in perspective. The Guifoyle's got their diagnosis and were contacted by the drug company regarding treatment. They also had a case-worker assigned to their family and had help applying for funding. Excellent support from Biomarin, which is exactly what families need when they are going through such a difficult transition in their lives.

Rewind to our diagnosis and the NON-help that Biomarin gave to us. We made contact with the drug company to ask for support in having Naglazyme approved for use in Canada and got no assistance. We pleaded to access the drug at a reduced rate because we were going to bankrupt our family and friends and anyone we could think of. Their cold response was "that would affect our price in Canada." In essence, no help from Biomarin to get the drug approved, no help from Biomarin to try to pay for treatment ourselves, and no assistance in our fight with the provincial government to get treatment funded for Isaac. In our view, this is completely wrong and truly sheds light on Biomarin's goals -the bottom line. In a country where there is a reasonable assurance that they will receive funding for providing this ridiculously expensive treatment for affected children, they will provide as much assistance and support as needed. In Canada, where there is no application pending for the drug to be approved and there is no assurance that funding will be forthcoming by governments, officials at the drug company disappear. They don't care about families and their struggles unless they are going to be paid for providing treatment. Sickening, truly sickening. What Biomarin should be doing is assisting all families and all affected children. Set up a compassionate program for those affected and where funding isn't going to be forthcoming. At a million bucks per child per year, they're going to be making enough money. Perhaps they can make their money AND feel good about the children they are helping. Lets not let these kids die because of financial considerations.

Onto other matters and what goes up, must come down. Things have been going so well with treatment and we're seeing a lot of changes in Isaac. However, got a bit of troubling news recently that reminds us that we're still fighting a progressive disease and we have to find a cure. While at the hospital last week, Dr. Clarke discovered a prominent heart murmur in Isaac and noticed that his heart was beating fairly fast. We quickly went for a chest X-ray and an ECG. We see a cardiologist on Wednesday and have an Ecocardiogram scheduled for earlier in the day. Hopefully this will prove to be a non-issue. But it again proves how incredible The Hospital for Sick Children is. They got Isaac in for tests ASAP with very little waiting period. We see a specialist a week after the initial concern was discovered. We know of and read about many families that have to wait a lot longer to deal with these issues. We're lucky to have Sick Kids' as our primary care center for Isaac.

The Isaac Foundation would also like to thank a group of grade 6 girls at Winston Churchill Public School in Kingston, Ontario. Last year, the girls were assigned a project that asked them to find a way to make the world a better place. They choose The Isaac Foundation as their main focus and worked hard to raise money to help us find a cure. They met every Friday to go over ideas and at the end of the school year, they presented the Foundation with a cheque for $500! This September, the girls approached me to tell me that they are still meeting weekly and they are still determined to help us find a cure for Isaac and other children affected with this disease. On Halloween, they went out canvassing in support of the Foundation and we want to thank them for their continued support. It's amazing how truly empathetic these kids are towards Isaac and his battle!

Take Care,
The Isaac Foundation

New Friends, A Touching Magazine Article, and More Changes...

2006-10-29T14:53:00.000-05:00

A few days ago, we received an email from a family in the US. Unfortunately, their son Holden has just recently been diagnosed with MPS VI. Holden is Isaac's age and will begin ERT very soon, which is a bright light for the family. They also have two other children.

We started The Isaac Foundation in order to fund innovative research project that aim to cure the disease, but we also wanted to bring affected children and families together. This is our first real contact with another family that is going through the same heart-wrenching ordeal that we are. I hope that our experience can help them during this tough time.

We fully remember the early weeks after Isaac's diagnosis...What an awful moment in our lives. Perhaps, as the Foundation grows, we can work to connect all families affected with this terrible disease and all work towards finding a cure. It will happen in Isaac's lifetime; I'm sure of this.

Please stop by Holden's website at www.caringbridge.com/visit/holdenguilfoyle and leave them a message of hope for their son and their family.

We also have friends from BC coming for a visit in early November. They have a child that has been diagnosed with MPS II and are wonderful people. Their son, Trey, and Isaac hit it off very well at the MPS Conference that we attended in Collingwood.

On another note, a very touching article about Isaac and the Foundation will appear in the next edition of Kingston Life Magazine. I'll make sure an online version is available, once the story appears. On the ERT front, Isaac's latest measurements have shown that he's grown an inch since treatment began 7 weeks ago! He hasn't grown in the past 8 months and now he's up over an inch already. He has his hernia repaired on November 16th. His breathing is quieter, his skin is softer, his hair is softer, and he appears to be moving around a lot better. Incredible!

Finally, we had a meeting with Susan Henry and Janet Grace, real estate agents for Royal Lepage in Kingston, Ontario. They would like to help us find a cure for Isaac, Holden, and others affected with this disease and have decided to donate a percentage of their commission to The Isaac Foundation. They very generous and thoughtful people. A link to their site can be found with the other links on the right. Please leave us any comments you can. And don't forget to drop by Holden's site.

- The Isaac Foundation

Stomach 3cm Smaller, Isaac 1 cm Taller!

2006-10-04T18:19:00.000-04:00

Four treatments now and things are still going well. They measured Isaac's stomach and it is 3 cm smaller, which means his internal organs are definitely shrinking down! And he was measured at 1 cm taller as well. How exciting!

We just got back from a cheque presentation at RONA, Isaac's second home and favourite place to visit. They've raised over $3000 for The Isaac Foundation! Everyone at the store is always so nice to our family and the LOVE Isaac. They truly are like family. It really is great to live in the community. They've given us such support during a tough time and have treated our son with care and compassion. We owe them a lot. An article will appear in the next edition of The Brighton Independent.

Please feel free to leave comments on any of our blog updates. There are spots at the bottom of each entry for you to post your comments. And please pass our blog on to everyone you know. Ever bit makes a difference.

Take Care,
The Isaac Foundation

We're Seeing Changes!

2006-09-30T08:57:00.000-04:00

Hi Everyone,

Well, we've had three treatments so far and things are going very well. Isaac tolerates getting hooked up to his port extremely well and spends his time watching DVD's or in the playroom during the 5 hour process. The nurses on the floor are great!

We're already seeing changes! His internal organs have shrunk down and his stomach isn't as distended at night as it used to be. I think he is breathing quieter at night, although Ellen isn't so sure. Yesterday, long time friends of ours commented that his features seemed to be less course. How incredible!

We are indebted to Elizabeth Witmer for her unrelenting efforts to get Isaac on this treatment. It has really restored our faith in politicians, knowing that they truly do work hard to represent their provincial constituents. She is a wonderful person. We're not sure how to thank her fully for the way she has changed our son's life.

Our issues with the IGT department at Sick Kids' has been looked into by the patient advocate department at the hospital. Not sure what will come of it but we are hoping other families won't have to experience the difficulties that we had to. Families have more to worry about with their sick children and shouldn't have to deal with problems with their hospital.

Keep watching for Isaac's updates and news about upcoming Foundation events. We're fortunate to have many school groups doing projects on The Isaac Foundation. We're thrilled that Isaac has had such a positive impact on these students lives and they want to help spread the word about the Foundation and our quest for a cure. Every bit will help!

On that end, we are getting close to being able to provide our first research grant into MPS VI research. We're talking with Dr. Clarke about where the innovative research is being done and what ideas look most promising for our son and others affected with this disease.

If you have any ideas for future Foundation events or would like to host an event, do let us know. We're happy to help with anything...

Take Care,
The Isaac Foundation

Treatment Continues

2006-09-22T13:08:00.000-04:00

Hi All,
Just a quick post to let everyone know that Isaac had his second treatment yesterday and things went very well. What a huge relief!

Dr. Clarke, Isaac's MPS Specialist, came in to oversee the infusion and chat with Ellen. We talked to him about the entire process and got his sen

se of where the innovative treatments for this disease are heading next. He will prove to be a valuable source of information for the Foundation as we begin to search for places to send our research dollars.

Hope you like the new version of the News Section. Using this blog service, it will make it much easier to update and maintain.

Take Care,
The Isaac Foundation