The End of the Beginning…

Well, this is it. Our last treatment.

After 12 years of weekly infusions, today is the last one. It comes with mixed emotions, Hope, Fear, Worry, Anxiety, and Anticipation to name a few. And Gratitude. Heartfelt gratitude.

When Isaac was diagnosed, we didn’t know what the future would hold. We didn’t know if he’d have a future, let alone how far down the road he’d go. When this treatment was approved, we had to fight to bring it to Canada for Isaac, and then fight to keep it here for him. Along the way, we were lucky to help pave the way for other children in need, and I’m grateful for every experience we’ve had from day 1 until today.

I’m grateful for the children and families we’ve met along the way, and those we’ve been fortunate to help and become part of their lives.

I’m grateful for the support we’ve received, for the people who’ve followed our journey, for those who’ve helped us fund our research to find a cure.


I’m grateful for the few of you who where there on the front lines to help pick us up when we were at our lowest, most heartbreaking of moments, standing beside us as our son
fought so bravely for his life.

And I’m grateful for those of you who are still here, those close friends who know our lives have been difficult, and that we have to disappear from time to time to cope and reconnect. I’m grateful to those of you who get that, who are there when we reappear, even if just to bring us in for a quick glass of wine before we have to disappear for a time again.

Isaac and his hero, John Mayer.

We’re close, everyone. Thank you to you all for helping us raise these funds to get this research to where it is today – finally getting into kids in need, and hopefully providing them with the cure we’ve been searching for. Special thanks to you, Danny Michel, for helping us raise those funds by sharing your beautiful music with us, and for always saying “Yes” when we were in need.

And to you, John Mayer, for simply being a kind, caring, empathetic and compassionate friend to our son, our family, through this all.

This is the end of the beginning of this story of Hope, and we start the next chapter in 2 weeks time.

Together. Like always.

Pictured: Isaac’s first treatment, and his last.  Isaac with Danny Michel and Isaac with John Mayer.

War of My Life…


At night while snuggling with Mom, he’s been asking if there will ever be a surgery that he doesn’t wake up from.  Quietly with me, he’s asking how people who are paralyzed from the waist down use the bathroom.

Good lord, I don’t want him to be afraid.

I’ve often said the most difficult thing about this journey has been being forced to see my own son’s mortality each and every day.

I was wrong.  The most difficult thing is watching him see it in himself.

It’s heartbreaking.  He’s carrying a weight that’s impossible to bear, but he’s doing it bravely and gracefully. And, for the most part, with a smile on his face.  That weight, however, has been more evident these past few days, especially during his visit with his hero last night.

As many of you know, Isaac’s mobility has deteriorated rapidly over the past 6 weeks.  Last Tuesday, he went in for some more testing and was admitted to the hospital so they could find the root cause of things.  In November, he had his second spinal cord decompression surgery, a nerve wracking experience, even knowing he was in the best of hands. Immediately after the surgery, Isaac’s mobility improved greatly – he was walking better, was more loose.  Today, however, he can’t walk flat on his feet, his balance is gone, he’s stiff and sore.  He’s been waking up numb from the waist down, getting tingling down his legs and inside of his foot.  If he raises his arms, he gets a jolt down his leg.  During one test last week, he couldn’t tell if the doctor was moving his fingers up or down while his eyes were closed.

And he’s scared.

Hospital results showed that the surgeons need to go back in and do another spinal cord decompression in the same spot, which will hopefully relieve these new symptoms and help him regain his mobility.  He’s been fitted for a neck brace, and surgery will take place this Thursday at Sick Kids.  He’s in the best hands – Dr. Jim Rutka has been his neurosurgeon since he was a baby.  Dr. Cengiz Karsli has done all of his anesthetics.  We trust them both fully.  Joining both of them will be Dr. Drake, the chief of neurosurgery at Sick Kids, and Dr. Zeller, the chief of orthopaedic surgery.  The best will be there to look after him.

Throughout his entire battle, Isaac’s always kept a positive attitude and has been more brave than anyone I know.  He still is today, as well.  Being fitted for his brace saw him laughing and singing – he was smiling and making us smile through our tears.  At the same time, however, he’s grown more afraid of things.  More exhausted and tentative.  He’s not able to cook with his brace on, and hasn’t updated his website in a few weeks.  At night while snuggling with Mom, he’s been asking if there will ever be a surgery that he doesn’t wake up from.  Quietly with me, he’s asking how people who are paralyzed from the waist down use the bathroom.

Good lord, I don’t want him to be afraid.

But he is.

We tried to get him out to see his hero, John Mayer last night.  John kindly offered to quietly sneak in to the hospital to visit Isaac if it looked like we couldn’t make the show.  In retrospect, we probably should have taken him up on his offer – spending a week in the hospital has left him exhausted and drained on top of the stress and worry he’s under. However, we thought heading down to the show would be a good outing for us all, and seeing John would raise his spirits a lot.


And it did.  He loved the show (he especially perked up with Shawn Mendes took to the stage with John!)  But it was different, too.  Isaac wasn’t as talkative during his visit with John as he usually is, or laughing and joking.  He had a brave smile on his face, but the exhaustion was noticeable.  His discomfort in his brace was clear.  Isaac didn’t ask John to play a song (he regretted it after our time with JM was over and tried to text him in time to hear a song, however), and he didn’t want to chat about the new music much.  He just wasn’t himself, and hasn’t been of late, which, of course,  is completely understandable.

f9068d1a05a011e3b96f22000aeb0cca_7But last night drove it all home for me.  This is more real now than it ever has been before.  I was already broken, but watching him these past few days has been painful and heartbreaking.  I told Ellen how tough that was for me to see, and how tough it was for me to see people posting photos of their last time together compared to this one.  Last visit was all laughs and giggles, free spirited and stress free.  Ellen said she knows people like John will understand and that it makes this experience almost as real for those around us as it is for us.  I know his classmates understand.  I know his teacher understands, too.  And it will make them face that this is tough, but also allow them to celebrate with us once this is over and he’s back on the way to better health.  And Ellen’s right (she always is!)

Driving home today, Isaac told me he just wants this all to be behind him.  He doesn’t want to visit his classmates until this is all over, until he’s feeling better again.  He can’t wait for Thursday and is heading into that surgery with all the grace and determination one could ever hope for.  He’ll get there – we’ll all get there.

We have to.

Thanks, as always, for dropping in on our update.

We’ll update after surgery on Thursday.

With Love,


P.S. – We rolled back into home an hour ago.  Isaac’s playing some Minecraft and we’re going to snuggle up and watch a movie together this afternoon.  Before he settled into his gaming, he did take some time to look at his brand new guitar that John gave to him as a gift.  He gave one to both Isaac and Gabriel, each signed with a special message – both meaningful and sweet.  Isaac loves his, and he perked up a bit last night as he opened it and pretended to play a quick song, and again as he checked things over today, telling me how much he loves it and how wonderful it is.  It was a thoughtful gesture, one that again shows how lovely John really is – we should be bringing him gifts rather than the other way around.  I’ll write about this and his message for Gabriel sometime soon.  For now, our energy is in getting to and through Thursday.




An Update, and Some Perspective

Isaac had another good day today! He sat up a few times, was able to raise his head for a very short amount of time, and even stood (with assistance) for about 30 seconds! We are hopeful to stand for a bit longer tomorrow and maybe, just maybe, take a step or two! He is a long way from dancing at our GALA FOR A CURE next weekend, but he’s making progress and we’re thankful for every little inch we make forward.

A children’s hospital is a tough place to be in on the best of days. But on evenings and weekends, it’s downright sad and awful. Sound echoes through the empty halls, and the people who remain in the mostly deserted building are here for the most heartbreaking of reasons. We are some of lucky ones – we know that Isaac will be home soon, out and able to fight his disease for another day. But many kids in here won’t ever be leaving, and it really puts everything into its proper perspective.

Don’t worry about the small things – most things we get upset about pale in comparison to the fight the kids in here face every day. To highlight this, a stat call was just made on our floor for neurology, followed by a code blue. Worst of the worst. Some little one is suffering, some parent hurting. It shouldn’t ever be like this for our kids.

Please Keep things in #perspective. The last decade I’ve spent with Isaac at Sick Kids has taught me to do just that.

Forget the small things, the little annoyances, the petty problems. Cherish the time you have with those you love. And tell them as much. Go out more, do more, live more. Give your kids an extra long hug tonight, give them an extra kiss.

Thanks for being here, as always, and helping us along the way. Oh – yes, we are reading a book called “No Girls Allowed!” – it’s why Mom isn’t in the photo 😈

Love Never Ends

Hi Everyone,

I’ve procrastinated on this post for a whole host of reasons, but mostly because it’s been difficult to process, collect my thoughts, and share them with you.

Sadly, Justin Van Herrewegen, someone I’ve admired for a long time, passed away peacefully this past Friday.  Justin was 34 years old and fought a courageous battle with MPS VI.  He was dearly loved by his parents Debi and Paul.  He always had his best friend and sister Ashlee by his side, and all three were with Justin on Friday when he finally succumbed to his disease.

Justin meant the world to me – I saw him in many different lights at the same time, for obvious reasons.  All at once, I saw Justin as a son, a mentor, a friend.  Someone I could look to for his bravery, for the example he set.  Someone who showed me that it’s possible for someone battling such a savage and relentless disease to lead a full life.  Someone who gave me Hope, always.

Screen Shot 2016-07-07 at 12.27.02 PMAnd every time I looked at Justin, I saw my Isaac (and if I ever forgot to notice, Facebook always asks me to tag photos of Isaac, and suggests Justin as the person I should tag 🙂

I met Justin soon after Isaac was diagnosed, and we travelled out to see him at a coffee shop near his home.  I was heartened as he showed me his car – his pride and joy – and relieved when he told me he could drive without issues. I took in everything he told me during that visit, and always looked to him as an example of what was possible.

Justin had a million friends.  He could do almost everything by himself.  If things weren’t going well fighting MPS, he took the disease head on with bravery and smile on his face.  And he moved forward.  He always moved forward.

The most incredible thing for me?  He did all of this without access to treatment for his entire life.  He fought a brave battle with MPS before treatment was available.  And he lived his life courageously, fully, and with pride.

This is why Justin always gave me Hope.  Hope for the future of my son.  Hope for the future of all of our kids.  And I’m going to miss him dearly.

Isaac-and-JustinI was fortunate to spend more time with Justin over the past year.  I always enjoyed our talks, enjoyed seeing him.  And marvelled at his bravery each and every time.

At our Gala this year, Justin was very ill in the days leading up to the event.  But he surprised us by arriving with Ashlee, and stayed the entire night.  For those of you who know me well, I always try to take a moment to have a glass of whiskey with those who are closest to me.  Justin hadn’t had a drink in over 3 years, but he agreed to break his streak to have a nice glass with myself and his sister.  We gulped it down like old friends, and the smile on both of our faces grew wide.  It’s that smile that I’ll remember forever, along with his ability to make those around him smile alongside him.

A car fanatic, I dropped over to Justin’s house to take him for a ride in my Tesla.  We went in his car first, for what I thought would be a nice drive around the block.  Not so!  Justin punched the gas pedal and we got going – FAST!  Faster than I’ve ever driven before.  I looked over at Justin and he had a huge grin on his face.  I knew he was in control so I just enjoyed our time ripping through the back roads of Bowmanville!  We swapped into the Tesla when we got back to his house, and I let him drive that too.  And we went Fast.  No FASTER than the first time.

He looked at my pale face and laughed and laughed.  We shot a photo together that day, and I’m going to have it printed to hang on the wall of my office this week.

I know a lot of Justin’s friends have been hurting over the past few days, but none so much as his parents and his sister.

13580666_10157052506490291_3406877496346988526_oBoth Justin and Ashlee have told me on numerous occasions how incredible their parents have been over the entirety of Justin’s battle with MPS.  Always by his side.  Always available when in need.  And always there with love, care, and compassion.  As the father of a child fighting the same disease, I know that Debi and Paul are living their worst fear, and going through their worst moments together.  Along with Justin, I’ve been thinking about Paul and Debi during the past week, during my the many sleepless nights I’ve spent processing his passing.

And Ashlee.  I’ve been thinking about Ashlee a lot.  She’s been with Justin through this all, and has been the sister and best friend that any of us can only hope for in this life.  When I visited Justin in the hospital earlier this year, I walked in to see Ashlee massaging Justin’s legs, something which she had been doing for most of the night.  Justin’s heart wasn’t functioning well and his legs had swollen up.  He was in pain and couldn’t sleep.  Only with Ashlee working to increase the blood flow in his legs was he able to get some sleep.  And she did that whenever he needed it, even if it meant staying up all night.  And she did – often.  She brought a cot into the hospital room and spent every moment with Justin.

She sacrificed whatever she needed in order to help Justin however she could.  She tried to take whatever burden away from her brother, no matter what the cost was to her.

I’ve seen my own son Gabriel in Ashlee.  Both fiercely protective of their best friends.  Both empathetic. Both overflowing with love.  And both the type of people we should all wish our children turn out to be.

My friend Stuart Mclean over at the Vinyl Cafe wrote a story called Love Never Ends.  It’s one of the most beautiful pieces of writing I’ve ever read, and I re-read that story often when I’m struggling with difficult things in life.  It’s the story of an older lady coping with the loss of her husband, he life partner and best friend.  After his passing, she finds a framed photo of him that he hid for her before he died.  On the back is written  (from Corinthians 13:7):

Love is patient, and love is kind. Love is not jealous or boastful. It is not arrogant or rude. Love does not insist on it’s own way. It is not irritable or resentful. It does not rejoice in wrong, but rejoices in the right. Love bears all things, believes all things, hopes all things, and most of all, Love never ends.

As much as Justin was loved, he loved Ashlee, Debi, and Paul just as much.  And the love they shared for each other won’t end with his passing.  That love will never end.

I’m a better person from having known Justin.  Stronger and filled with more Hope.  I’ll take that strength with me and I’ll keep Justin with me as I continue my mission.  Most importantly, I’ll work extra hard to honour his battle in the best way that I can – by finding a cure.

Sending my love to you Ashlee, Debi, and Paul.

Rest in Peace, Justin.

*** Justin’s obituary can be read here.


Run for a Cure – Training – Ontario

Today’s short and slow run took me through the streets of downtown Toronto, and past the Ontario Legislature. I used to think that real change happened in that building – then my son was diagnosed with a rare disease. Suddenly, it became evident that we have a health care system that touts itself as the best system in the world, but only if you don’t need access to expensive medicines to stay alive. It dawned on me early in this battle that real change doesn’t happen in that Legislature or by the people elected to work there – it comes from us. It comes from the people who need it most.

Had we not worked so hard to change public policy, the people in that Legislature would have sat back and watched our son die. Same holds true for the other kids diagnosed with MPS in this Province. The people in that Legislature believe that treating symptoms is better than treating the disease – because it’s cheaper to do so and helps to keep their budgets in check. But tough action, determination, and a brave fight by our kids and families has helped ensure access for many who need it. There is a new battle brewing, one that will take place in the very near future – a battle for access to treatment for our MPS VIA kids. I’ll be there to lead the charge because I believe in a health care system that is fair and equitable for everyone – even if you happen to have a rare disease, even if you need access to an expensive medicine to stay alive.

So – this warm up run is dedicated to the incredibly brave families I’ve met here in Ontario, and to the patients who are the bravest of all. I’m so lucky to know you and I’ll be running for you in Ottawa. This is for Isaac, Jasper, Lillian, Jack, Avery, Luke, Zane, Derric, Dawn, Riley, Tyler, Jordan, and Ayub!

Godspeed, Heather. You Will Be Missed!

As the Alberta Election race enters the final hours, so too does the official time in office for one of the most honourable and compassionate souls I have ever met. Once the results are announced tonight, the retirement of Heather Forsyth officially begins, bringing an end to a highly successful political career.

I met Heather a few years ago when I was struggling to find help for a little girl, Aleena Sadownyk, who needed immediate access to life-saving treatment.  Because this treatment is expensive (the fourth most expensive drug in the world), we were getting nowhere with the PC government, at that time led by Premier Alison Redford.  Desperate for help, I contacted Heather to see if there was anything she could do in her capacity as the Official Opposition Health Critic.

The moment I spoke with Heather, I knew I had connected with someone that would do everything in her power to help this little girl.  She listened to everything I had to tell her, keyed in on the most important facts of our case, and sprang to action immediately after our initial phone call was over.  I was impressed, and had Hope again for helping little Aleena.

Now, a quick aside.  Over the years, I’ve had the pleasure (sometimes) of working with many politicians throughout the country.  Oftentimes, these politicians offer their help during advocacy cases to further their own stature within political circles – helping with these advocacy cases usually translates into scoring political gain against the government of the day, and members of the Official Opposition jump at the chance to score such points.  I’m not naive in the slightest – I understand that many politicians get involved in my advocacy pushes because of the prospect to score those sought after blows against the government.  And I’ve never minded that fact – I’ll do anything to help our kids suffering from rare diseases, and if a politician wants to help out – for whatever reason – who am I to turn down the help offered, especially when we are talking life and death situations for our kids?

4d5f8030f60e11e2ad2b22000ae80c6b_7While I was impressed with the speed that Heather and her team sprang to action to save Aleena, I was more impressed that I felt she was doing it out of a love for helping people, and a passion for doing what’s right.  Moreover, I truly felt she was working as hard as she did because of the heartache and heartbreak she felt for what Aleena and her family were dealing with.  However, my close friends were skeptical – they have heard me speak often about the help I’ve received in the past and they were sure Heather took this case on for those same reasons.  They were sure she was doing this for political gain and for personal ambitions within that political world.  I vehemently disagreed – I consider myself a good judge of character, and I was sure that Heather was one of those rare people in the world of politics who were helping because they could, and because she felt that it was incumbent on her to make a difference in the life of this little girl if she were able.

And you know what?  My first impression was right.

Shortly after Aleena had her treatment approved – solely due to the hard work of Heather and her team led by Matt Solberg – Heather shared with me that she would not be seeking re-election the next time the Province when to the polls.  Win or lose, Heather didn’t have a political future she needed to worry about.  Political gain didn’t play into the situation at all, though I felt that was the case all along.Aleena is doing incredibly well today – she had her life saved by one of the most caring and compassionate people I’ve ever met – ever – in the world of politics.  When she looks back on a career filled with a long list of accomplishments – from serving in Cabinet to being the Leader of the Official Opposition – I know that Heather will be able to remember Aleena and the impact she had on her life as being one of the most satisfying and rewarding moments.

I’m sad to see Heather leave the world of politics.  She’s one of a kind – one of the few that go into the office everyday to try and make the world a better place for those around them.  She’s always been honest, truthful, kind, caring, and compassionate.  And she saved the life of a little girl.

0b6291d2079211e3943422000a9f1416_7The Alberta Legislature is better for having Heather serve amongst its storied halls, and the people of Alberta are better for having her represent them for so very long.  Personally, I’m a better person for knowing her, and I’m proud to call her Friend.

Godspeed, Heather Forsyth.  Enjoy your retirement, it’s well deserved.  Thank you for your service and your love for our kids battling rare diseases.  We will be sure to send you updates on Aleena as she makes her way through school, as she gets her first job, as she walks down the aisle on her wedding day.  Thank you for your kindness, for your love.  We will forever be indebted to you for that, and more.

To Change The World – Treatment Approved in New Brunswick!

doubt that a small group
 of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. – Margaret Mead

The quote above is one that we have displayed prominently on our website, and they are words we live by.  Existing in the world of rare diseases requires one to have such a mindset – to make a difference in the world of rare diseases, you have to begin with a small group of people.  Here in Canada, Isaac is one of just thirteen individuals that suffer from MPS VI.  In the broader family of MPS, we’re still talking less than 250 people battling the disease country-wide.  That’s 250 people out of 35 million (or just .0007% of our population, for our mathematician supporters!)  In essence, we’re a small group.  But we think big, and truly believe that we can change the world for our kids.

I have this quote on our website for many reasons – one of them being to remind myself that things are possible, even when we’re facing odds that most people would bet against.  Little did I know, that quote would help a government approve a treatment for a little girl who desperately needs it.  Little did I know, that quote would help save her life.

The photo above is of Kamie Babineau, a beautiful little girl from a town near Moncton New Brunswick.  Kamie’s mom, Parise, connected with me in December 2014, worried that her daughter was suffering from MPS VI – the same disease that Isaac has. The same disease that Jasper and Aleena and Violet have.  The same disease we’ve worked tirelessly to find a cure for, the one we’ve had to battle governments to provide life-saving treatment for.  Parise was obviously worried for her daughter – she sent me a photo of Kamie and one of Aleena that she found in a newspaper report and felt they shared the same features.  One glance at Kamie’s photo told me she was on the right track, but confirmatory tests needed to be done before we could begin the process of setting up treatment for her.  Confirmation of MPS VI was given at the end of January, and an application for reimbursement for treatment went into the government of New Brunswick in early March.

If you’ve been following our blog, you’ve seen how difficult it is to access treatment for MPS VI in Canada.  It’s expensive (the third most expensive drug in the world, according to this website and many others like it,) and governments are reluctant to cover the cost of the treatment for our kids.  Reluctant, even though it’s life-saving.  Reluctant, even though it gives our kids the chance at a healthy life.  Reluctant, even though it staves off the ravages of the disease, slows down or halts its progression.  Reluctant, even though the cost of not treating the disease is sometimes far more costly than treating it when you take into account the costs associated with managing the multi-systemic failures that ensue in children without access to therapy.  If you need some reminders on how difficult it is for our kids to get access to treatment in this country, have a look through this collection of news articles and stories.  To summarize – it’s difficult, and treatment is rarely approved without a fight.

DSC_0144I had been told that New Brunswick would be especially difficult to deal with.  Indeed, I had already reached out to the Province a few months earlier upon learning that a boy with MPS IVA needed access to treatment and the provincial bureaucrats wouldn’t accept the application for funding because they didn’t have a process in place to review the application.  I called and stated my concerns and frustration that an application wouldn’t even be accepted for this child, let alone reviewed and denied.  I was told to wait until the bureaurcratic process of a CDR Review was completed and that they would not consider any request for treatment until that time (that review gets completed in 2 days from now!)  So, I was prepared for a difficult start to accessing treatment for Kamie, and I wasn’t wrong when I began the process a few weeks ago.

I again called the bureaucratic branch at the Ministry of Health in New Brunswick that looks after pharmaceuticals, and talked to the same person I had talked with many months earlier.  I patiently explained the situation.  I had previously sent an email with background information (it wasn’t read until I was on the phone with them), and explained that there were already 9 other children in Canada receiving the same treatment that Kamie desperately needed.  I offered to provide all the resources they could ever need to produce a review of the application, including the International Treatment Guidelines (which assert that treatment should begin immediately after diagnosis for best outcomes and that the primary way to deal with this disease is to provide the treatment we were seeking), and the recent 10 Year Resurvey Data (which shows the incredible outcomes for patients with access to treatment over a 10 year period).  I also sent in a full folio of MPS VI and other articles showing the benefits that treatment brings to kids suffering from this disease.  I offered to connect them with the leading MPS VI experts throughout North America to help them with the data.  I expressed and provided ample evidence to show that symptoms that appear prior to treatment beginning cannot be reversed.  Many of these symptoms are devastating, and I expressed that we were racing against time to stave off such symptoms and provide Kamie with the quality of life that she deserved, not the quality of life that a disease untreated would leave her with.  At the end of our conversation, I asked how the application would be reviewed and when an expected decision would be rendered.  I was told, quite bluntly, that they had “no idea.”

This isn’t uncommon when dealing with this disease and applications for reimbursement of treatment.  When a disease affects .0007% of a population, we can’t expect governments to know everything about the disease and the process that would be used to review applications for treatment.  However, what should be expected is that these types of situations are taken seriously.  What should be expected would be for the bureaucrats to spring into action, figure out what review process was needed to deal with the situation, with an immediate and expeditious review undertaken.  This is not what happened, unfortunately.  Two weeks passed with the same update – they had no idea how they would review the file.  In fairness, they did express their hope that it would be approved, but couldn’t figure out exactly how to initiate the file set before them.

DSC_0201From here, my impatience got the better of me.  But it’s an impatience that stems from necessity – necessity to get treatment initiated immediately, the knowledge that Kamie’s disease is progressive and unrelenting, the hope that she can get the help she needs before her body is further deteriorated by MPS.  This impatience is where the story changes for the better.

I placed a call into the Minster of Health, Mr. Victor Boudreau.  I’ve been fortunate to work with may of the Ministers throughout the country, and I hoped he would take the time to get back to me, hear my concerns, and put a plan in place to look after Kamie’s application.  Mr. Boudreau had his staff look into the issue.  We connected numerous times over email, and I provided him with details about the frustratingly slow action being taken by the Ministry.  What ensued thereafter is something I’ve not seen in this country, from any official dealing with treatment for MPS VI – a determined effort to review the application for funding, and a promise for a prompt resolution/decision for the family.

We scheduled a direct meeting with Mr. Boudreau at his constituency office in Moncton.  I hopped on a plane, met with Parise and her husband, and planned out how we were going to handle the meeting.  In previous fights for treatment for other kids, we learned to be prepared for anything, and we learned to show governments that we would do anything to help save our children.  We were prepared to let Mr. Boudreau know that we weren’t going to go away, that we would do everything necessary to help save Kamie.  We were in this for the long haul because treatment for Kamie was our only Hope for her future.

At the meeting, Mr. Boudreau began by telling Parise that cabinet had approved treatment for Kamie.  Just like that, her life was changed.  Just like that, her life was saved.  In two days – two days! – the application was reviewed by Mr. Boudreau’s team, a presentation was put to the government’s cabinet, and an approval was passed.  Quick action by Mr. Boudreau changed the lives of this family forever, and I’m incredibly indebted to him for it.

How does this story relate to the quote above?  The Minister told us that he was on The Isaac Foundation website to research the disease, our organization, and read about the work we’ve been doing for kids across this country.  Displayed prominently at the top of our page is Margaret Mead’s quote, he told us.  Minister Boudreau informed us that Premier Gallant, the leader of the government in New Brunswick, uses that quote all the time around the cabinet table.  He uses it to inspire his government to do what is right for people.  He told us that he took that quote from the website when presenting Kamie’s case to the Premier and told him that his government could be the “small group of people” in this situation.  They could be the ones to change the world, even if just for one family.

In all my dealings with governments, bureaucrats, and politicians over the past decade, I have rarely been as impressed as I was with Minister Boudreau on Monday morning.  He saw a problem, saw a need for prompt action, saw the need to help a family in need, and went about doing everything he could do to make things better.  While I’m sure it’s too early for him to understand what his actions, his passion, and commitment to make a difference really means, I know from experience that he will look back on this and see this as part of the legacy he’s left behind, part of the good he was able to do while in office.  Saving someone’s life will remain with you forever and, usually, change who you are for the rest of your life.  Just ask Heather Forsyth, leader of the Wildrose party in Alberta, the person who worked tirelessly to save the life of Aleena Sadownyk.  Just ask Elizabeth Witmer, the person who did everything in her power to save my son Isaac’s life.  I hope Minister Boudreau looks back on this with pride, and I hope his family can learn just how much of a difference he made to the life of a little girl this week.

I know this entry is long, but before I sign off I want to leave you with the other quote I live my life by, one that guides me wherever I go, whenever I get the chance to meet with families battling a rare disease like we are.  It comes from my favourite book, To Kill A Mockingbird, from a character whom I wish I could be more like in this world – Atticus Finch.  In this novel, Atticus works hard to teach his children about courage.  He leads by example, and hopes his children realize that they can make a difference in this world if they truly believe in what they are doing, no matter what the consequences may be for themselves.  Atticus tells his daughter that:

“Courage is not a man with a gun in his hand. It’s knowing you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do.”

In many ways, this is exactly what we face when we’re dealing with rare diseases and treatment for our kids.  The initial diagnosis is devastating for families.  Knowing a treatment exists provides hope, so much hope during those dark days.  Families are devastated again when they find out that governments deny access to those treatments – take that hope away – solely based on financial considerations.  Expensive treatments aren’t the fault of patients and families, but they bare the consequences.  Oftentimes, we fight with grace and courage to get the access to treatment we need, against all odds.  Rarely do we win, but sometimes we do.  We did yesterday, with the help of Minister Boudreau, and I can’t thank him enough.

So – where do we go from here?  Well, there is another child suffering from MPS in his Province who needs access to treatment.  He’s the same boy I called the Province about many months ago without success.  Perhaps the application we tried to submit many months ago can now be reviewed, and hopefully Mr. Boudreau can do what he can to assist.  With help, perhaps the little boy in need can now get the help he deserves.  I know I’ll keep trying to make it happen, and I hope to be met halfway by the Government of New Brunswick.

Thanks for hanging in to the end of this entry.  It’s a long one, but one of the most important ones we’ve ever logged.

Till next time,


Foundation Poster



Isaac Update – Corneal Transplant

Hi Everyone,

I’ve just returned from one of the most rewarding weeks I’ve ever had in my role as Executive Director of The Isaac Foundation.  I’ll save updating on all that was the MPS and Adulthood Conference for another blog posting.  For now, I wanted to give you an update on Isaac’s health as the conference, for me, was overshadowed by the news we received yesterday (and while I was still away) that Isaac requires and will be undergoing double corneal transplants soon.

This news was shocking and upsetting to us, but not surprising.  We’ve always known that this was on the horizon – or that the possibility of this was on the horizon.  But he’s been so stable in his health during the past 6 months that it left our minds as a possibility.  But stable isn’t quite the right word – he’s improved since January, improved considerably.  I guess this is why the news we got yesterday was a tough to take.

First off – Isaac’s being incredibly brave.  Please know that.  Me?  Not so much, but I’ll stay strong because it’s what I have to do.  He expressed very eloquently that how his eyes are important to him because he need to be able to read (he’s a veracious reader and it’s unimaginable to him that that could be put in jeopardy.)  He wants the surgery to protect that hobby, which is both incredibly cute and heartbreaking.

Now – corneal transplant…what is this and why are we here now?

Kids with MPS accumulate a buildup of cellular waste in their bodies known as glycosaminoglycans, or GAGS.  Enzyme Replacement Therapy (ERT) helps to break those GAGS up and clear them out of the body.  But sometimes ERT doesn’t prevent the clouding (caused by the GAGS) that takes place in the eyes. And Isaac has always had corneal clouding.  Quite severe, in fact, but it’s been severe since he was very young.  In fact, if you were to look at Isaac’s eyes today, they don’t have much colour – they are grey due to the clouding.

Isaac’s glasses have corrected his vision over the course of the past numbers of years.  The clouding has continued to get worse – to the point where the doctors haven’t been able to see into his eyes for about 2 years.  But still – his vision has been stable.  A big change happened, however, over the past 6 months.  Vision in his left eye has deteriorated considerably – 20/30 down to 20/80, and this is quite concerning.  The result?  A decision to move on with the transplants that we thought were still a number of years off, in the very least.

Doctors are very good at doing this surgery, though I have to admit that I’m still very scared and worried.  But our MPS community is amazing, and many parents are rallying around us with love and support – something I’m truly grateful for.  And Isaac’s friend since childhood, who also suffers from MPS, has had both of her cornea transplanted.  Her family will be a great resource for us as we embark on this latest battle, and she will be able to talk to Isaac about what to expect.

And quite serendipitous – when I arrived home, there was an invitation in my email for me to tour one of the best (if not THE Best) transplant clinic for kids with MPS in the US.  I’m excited to attend and, perhaps, garner a bit of information on the process along the way.  The clinic specializes in bone-marrow transplants and stem-cell transplants, but they be a wealth of information for me for this comparatively smaller and less serious procedure.

Anyhow – I feel a tad better now that I’ve written this and the decision has been made.  It was hard to get the news while I was away.  All I wanted to do was hug my boy, struggle together with my family, and be here for each other when we needed it most.  It was a tough night last night, and a long flight home.  But as soon as I arrived at the school to pick up my boys, they both jumped into my arms and hugged me for what seemed like an eternity.  And Isaac looks good, and strong, and – as he always does – brave.  He can do this, and so can I.

Isaac shared the news with his best friend at school, Amy.  I’m so thankful that he has someone he can trust to talk to, and I’m sure it made him feel better to share the news with his friends.

I’m listening to Danny Michel as I type this blog update – poignant because he’s playing at our upcoming Gala For A Cure.  The song below is called “Just The Way I Am”, and it’s providing the perfect soundtrack for my frame of mind right now as I think about Isaac, his bravery, and the joy I know he takes in having a supportive friend to talk to when things get tough.  It’s below for you to listen to as well – it really is a beautiful (and perfect) song for this posting.

Thanks for letting me ramble on.  I’ll update with more information when I can.  Thanks for always being here for us and our kids.

With Love,


2014 Research Grant Award Recipients

Research Logo


We are thrilled to announce that The Isaac Foundation has granted $200,000 in research grants to 3 innovative projects aimed at finding a cure for MPS!

We are proud to award $100,000 to Dr. Alberto Auricchio in Italy for his incredibly exciting work on Gene Therapy. We hope to see this work head to clinical trials in early 2015!

We are also very excited to award 2 $50,000 research grants from the MPS II FUND, under the leadership of Deb Purcell! The recipients of these awards are granted to Dr. Scott McIvor at the University of Minnesota for his work entitled “AAV Mediated IDS Gene Transfer for MPS II” and to Dr. Brian Bigger at the University of Manchester for his work “Evaluating Stem Cell Gene Therapy for Treating the Brain in MPS II”

This brings the total awarded over the past 6 months to $250,000 – all in hopes of finding a cure for our children.We look forward to seeing results from this research and will continue our work raising money to support these projects and more during the course of the next few years.

Thank you for your incredible support. None of this can happen without you.


10358314_229339850610555_1309889474_nHi Everyone,

Isaac’s just gone in for some routine surgery – removal of a dental cyst and a full eye exam under general anesthetic (his eyes have clouded over so badly that they can’t see in anymore, hence the more advanced look at things today.)  For most families, that is routine.  But for families dealing with MPS, anything under a general anesthetic is anything but routine, which is why Ellen, Gabriel, and I are sitting here, stressed and worried for our little boy.

Children suffering from MPS have compromised airways, and general anesthetics should be avoided at all costs.  I’ve heard of too many complications that our beautiful kids have had while under a general to sit here and be relaxed about the process.  MPS Specialists always recommend ensuring the best anesthesiologists handle our kids, and we are lucky to have the best today.

We are in the Surgical Waiting room at the Hospital for Sick Children, a place that I’ve grown accustomed to hating.  The tension in this room is unbearable, and the waiting is worse.  I can’t count the number of blog entries I’ve written from here – it gives me something to do to keep my mind off things.

Parents and families dealing with MPS gain a unique perspective on life throughout the entire journey, and perhaps more so while sitting in a room like this.  Sitting here, we’ve given up our child to the hands and arms of some of the best physicians in the world, and we have to trust that things will go smoothly.  I’m comforted in the fact that Dr. Cengiz Karsli (pictured above with Isaac), an incredible anesthesiologist that has handled Isaac’s care since our first surgery here, is once again handling things for Isaac today.  We were initially told that he wasn’t scheduled for Isaac today, and our stress level went through the roof.  But he arrived and immediately made us feel better that he was there.

When Isaac was 2 1/2 years-old, he had a very major spinal-cord decompression surgery.  The compression was so bad that they had to route out a piece of his vertebrae with a diamond drill bit.  Needless to say, it was a very difficult surgery and we were terrified for our son.  A few hours into the surgery, Dr. Karsli came into the waiting room looking calm and relaxed – he was actually chewing away on an apple and had a smile on his face.  He dropped in quickly to tell us that things were going OK and not to worry.  That moment made us admire him immediately.  It was something he didn’t have to do, but he did so to put our minds at ease, and I’ve always been grateful to him for it.  He probably doesn’t even remember that moment, but we sure do!

His relaxed nature is so helpful, but the kindness and care he shows our son really sets him apart from the rest.  Even if Isaac’s airway doesn’t give him any trouble this morning, we’ll always do whatever we can to ensure that Dr. Karsli keeps Isaac under his care for the next surgery (and there will be more).  If nothing else, this process is easier on us all with him being here, and we wouldn’t have it any other way.

Thinking back to our first surgery, this room felt so lonely for us.  Ellen and I sat here worried sick for our son, and it felt like it was just us dealing with things on our own.  We had just started our charity, and were trying to figure out how we were going to find a cure for our boy before it was too late.  Today, 8 short years later, it feels like we have an army of support behind us, and this room doesn’t feel as lonely as it did before (I still hate it, however!)  I posted a quick photo of Isaac earlier, and we’ve received so many words of hope and encouragement, and I’m incredibly thankful for that.  And with that same help and support, we’re well on our way to finding a cure for our kids, and we can’ thank you all enough for being here for us always..

I’ll update once Isaac comes out of recovery and once I find a spare moment.

With Love and thanks always,