This Beautiful Life…

BioMarin - MPS VI - Isaac Foundation

Of the millions of moments you live in this beautiful life, you never know what moments are going to remain with you. Often the things that stick are small things, moments you’d never peg as being important or memorable at the moment you’re immersed in them. And then one afternoon twenty years on, or thirty or forty or even fifty years drift past, and you catch yourself daydreaming once again about that Saturday afternoon your father took you with him to the place where he worked.

If you’re the type of person given to wondering about these kind of things, you might wonder what it was about that afternoon that draws you back to it over the years. Or maybe you aren’t that kind of person at all, and you think about it from time to time and then shrug it off, and return to the dishes or the garden or whatever it was that you happened to be doing at the time it tugged you away.

I thought about these beautiful words, written by my dearly missed friend and mentor, Stuart Mclean, a lot over these past few days, ever since I received word that my dear friend – my kindred spirit – Darren More was killed by an intoxicated driver while on his way to work.

Whenever I think about Darren More, the moment I inevitably return to is a sunny summer day at the Toronto Zoo some 7 years ago.

We had just been successful in our fight to get a very expensive life-saving treatment for Darren’s son, Jasper.  We worked tirelessly, around the clock, pushing the More family story in the media and within private circles.  We used every in and connection we had with the government and the media. We did everything we could – together – to help save his son’s life.  And we did it all without ever having met each other in person.  We had lots of emails, texts, and telephone conversations but never in person.

Until that sunny summer day at the Zoo in Toronto.

My family sat near the entrance of the Zoo that day, anxiously awaiting the arrival of the More family.  We had already developed a strong bond during our fight for Jasper, but there were still so many unknowns that led to those nervous moments of waiting.  What kind of people would they be?  Would we have anything to talk about?  Would our kids get along?  Would WE get along?  It felt like the moments before a blind date, and Ellen and I desperately hoped we would all hit it off.

In the distance, we saw the Mores walking toward us, and we met them 1/2 way and embraced immediately, all nervousness and anxiety fading away, replaced by an intense and immediate love – a bond that won’t ever be broken, even with his passing.  We walked through the zoo together that day, side-by-side, telling stories, sharing our experiences, comparing lives.

And we’ve been walking side-by-side ever since, united with a common and unflagging mission to save our boys, and to help and save other children in need along the way.  In those first moments at the Toronto Zoo we became partners, and we left that day knowing we’d do everything we could – together – to find a cure for our kids.

Ellen and I left the Zoo feeling incredibly hopeful, incredibly happy.  For the first time since our own son was diagnosed with MPS, we weren’t alone.

When we started The Isaac Foundation, it was because we had felt alone and without Hope.  After moping around for a few weeks after Isaac’s diagnosis of MPS VI, we decided that he wasn’t going to get any better with us sitting around and waiting for him to die, and we decided to do something about it.  We started our organization to find a cure for him, but to also be a light in the distance for anyone else who was as lost and in the dark as we were during those first few weeks.

It was an ambitious task, to be sure.  Find a cure for our son.  Easy, right?  We were small – just Ellen and I – doing all we could to raise as much money as was possible.  We’d attend small BBQ’s at gas stations, at the local RONA store.  Anywhere and everywhere.  We’d come home smelling like hamburgers and gasoline, proud of the $47 we made that day because it meant we were $47 closer to finding a cure for our son.  We worked hard, and we were focused.

But we were still alone, with nobody in this world who truly understood our world or our lives, our hopes and dreams, our everyday trials and struggles, our worries and our fears.

We were still alone.  Until that fateful day at the Toronto Zoo.  From that point on, everything in our lives changed, both for our family and our organization.

As an organization, I can trace our success and growth back to that very day.  Darren and Pam shared our vision and our drive, and they immediately signed on, immediately went to work alongside us.  They helped plan events, planned their own events, supported whatever was taking place in our area.  They became fundraising powerhouses, quickly helping us double our efforts, which allowed us to start funding more projects in hopes of finding a cure for the boys.  One of those projects was a gene therapy idea that looked promising, but far off in the future.  Little did we know that our collective efforts would make that project a reality sooner than we thought.

Darren was also always on hand to help me work through advocacy issues for other kids, helping to strategize and gain life-saving access to drug for other kids across our country.  He was my sounding board and my voice of reason, and is directly responsible for helping our organization save the lives of other children fighting this disease throughout Canada.  I always told industry folks that Darren was my “partner in crime”, and he was.

Darren was honest and sincere, and bold enough to speak up if he disagreed with whatever was going on.  He’d often tell me he was going to play Devil’s Advocate. He’d say “I agree with you but I’m going to play Devil’s Advocate here…”  to which I’d reply “There’s no such thing as a devil’s advocate if you agree with me Darren!” and he’d proceed to tell me the counter arguments regardless, knowing I needed to hear them, even if I didn’t want to hear them.

We only ever had one real argument.  It lasted a day, and it was probably over something stupid.  I’m not sure if many of you know, but I’m not exactly the easiest person to work with during stressful and busy times.  Darren certainly knew, and he always handled my lack of sleep and intense emotions with his trademark calmness, understanding, and grace.  Anyway, we got frosted at each other over something.  I was so upset that we were arguing that I couldn’t get any work done for the entire day.  I kept checking my texts and emails, hoping it was Darren and hoping we could just forget it all and send each other a virtual hug.  I don’t think I’ve ever been as distracted and unproductive as on that day, longing to simply make things right with someone I loved dearly.  He told me he was doing the same thing at his work, wasting the day away and hoping we’d simply get things back on track together.  And we did get things back on track, we did make things right, thank God.

I’m not unhappy that we argued that day because it reminded me how much I loved and needed Darren in my life, and how important he was to everything we had done and continued to do for kids.  Looking back today, it’s ironic that he always called himself the devil’s advocate.  In truth, that’s not who he ever was.  In truth, he was the little angel on my shoulder guiding me along the proper path, helping to keep me focused on our priorities, reminding me to keep lighting the path for others to find us when they needed us.  Even though he’s gone, he’ll forever be that angel, and I promise to stay on that road we paved together, right to the very end.

As I said, everything changed for our family and or organization on that sunny day at the Zoo.  His role with our organization has left an indelible mark on the lives of so many, but the impact he had on our family is just as special.  For me, he’s always been my kindred spirit.  Doing what I do for other families, I’ve always felt the need to project a sense of Hope – of bravery – a sense that things would always work out if only we all held out Hope together.  That’s a difficult thing to do when I was going through the same thing these other families are going through with my own son.  Hiding my vulnerabilities from other families so as not to add to their fear and stress was, and is, often exhausting.  With Darren, I never had to hide my fears.  I could always call him and cry.  I could tell him I was afraid.  I could say I felt like Hope was running out.

And he always understood. Always.  And he was always there.

He was there last year as Isaac was fighting for his life in the ICU at Sick Kids’ Hospital in Toronto.  I didn’t want to see anyone as I struggled to cope and stay strong.  I didn’t realize how much I needed someone until I got a text from Darren asking if I wanted a coffee.  I asked him where he was and he told me he was down in the lobby of the hospital, standing outside of Starbucks.  He and Pam didn’t know if they’d be able to see me, but they hopped in their car anyway and drove all the way to downtown Toronto, simply to offer me the hug they knew I needed.  I broke down the moment I saw Darren, finally allowing myself to be human and grieve, finally allowing myself to feel sorry for the situation we were in.  He let me hit rock bottom that day, and then to help me hit the reset button.  He was there to pick me back up again and remind me to keep fighting for my son, and I will always remember that drop in visit as one of the most special things anyone has ever done for me.

Through it all, we always talked about the day when the 4 of us – Pam and Ellen, Darren and I – could just sit down and enjoy a drink together, reminiscing about all that we’ve accomplished, revelling in the fact that we had found a cure for our kids.  We longed for the day when we could put all of this nonsense behind us and we could just sit and talk together like normal couples do without having the conversation shift to event planning, upcoming galas or golf tournaments or bonspiels.  We longed to be proud together – side by side – about curing our kids and wiping out this disease.  Although that dream to sit and have that together has been taken away for us, our hope for a cure for our kids hasn’t, and I’m comforted by the fact that Darren knew before he died that we’re almost there for Jasper.  We’re almost there for Isaac.  And we’re almost there for every other person fighting MPS VI throughout this world.

You see, the research project we’ve been funding throughout these last many years, that gene therapy approach  that looked curative but so far away, is finally being infused into patients.  Thus far, four patients have received the treatment – a one time infusion – and it looks as close to curative as we’ll ever get.  In November, Isaac becomes the fifth patient in the world to be infused, and we have plans to test the rest of the Canadian population for eligibility, also in November, at our  patient symposium.  At the same time, we’re working diligently to open a trial site here in Canada.  While the celebratory drink together will never take place, the hope we’ve been fighting for – the cure for our children – is happening, and that will forever be part of the legacy Darren leaves for us all.

Pam, Ellen, Darren and I have always felt that nobody understood our lives in quite the same way the 4 of us do together.  And that doesn’t change today, Pam.  We will forever be here for you, Daphne, Clayton and Jasper.  We started this journey together, and we’re still beside you, ready to give back everything you and Darren have given us.

As I sit in the sun writing this tribute – one of the hardest things I’ve ever had to write – I’m feeling the warmth of the sun on my skin, the calming sounds of the birds in the trees, and feeling the gentle breeze pass by.  Sunny days like today will always bring me back to that day long ago at the Toronto Zoo, when I first met you.  That day will always signify the true beginning of this journey together to cure our kids, and the first time Ellen and I didn’t have to feel alone through it all.

I’m grateful for that sunny day, and grateful to have had you in our lives.

Rest in Peace, my friend. You’ll be with me in everything I do…

Hey God I just lost a dear old friend
Hey God I hope he’s in your angel band
Hey God you know he believed in you
Just help me understand why you do the things you do
Hey God send me down some comfort please
Hey God I’ll be down here on my knees
Hey God will we ever comprehend
The forgiveness and grace that lies waiting in the end
Oh there’s anger and tears
For all of the years that your children won’t have you to hold
Oh my heart had been broken
The angels have spoken still I wish I could watch you grow old
Hey God I know he didn’t die alone
Hey God tell my old friend welcome home
Hey God please hear me when I pray
Pray for a little peace ’til we meet again someday
Pray for a little peace ’til we meet again someday
Songwriters: Vincent Grant Gill

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.


Saying Goodbye Has Never Been More Difficult

Everything comes to an end in this world, but sometimes we wish we could have a bit more time before the special things in life do.  If we could, we’d make time to stand still for a short while, just long enough that we could pause and enjoy a special memory, a special person, a special moment, for just a little longer.  Today was one of those days.

Dr. Julian Raiman came into visit with Isaac this morning for one last time before he heads back home to the UK to continue his stellar career in his home country.  He dropped in for his last visit with Isaac, his last check-up, his last report taking, his last few moments caring for our son.  It was a difficult time for us as parents and our kids, and I didn’t want the visit to end because, when it did, our time together would officially be over.

Julian has been with Isaac and our family for over 10 years.  He has grieved with us as he’s given us bad news, cried with us as we’ve adjusted to new circumstances in life, and celebrated with us during health improvements and triumphs.  More importantly, he’s guided us along this journey – always at the forefront, always in the lead, and always assuring us that we still had Hope for our son.

There aren’t many people I trust with my son’s life, and Julian Raiman has stood out amongst those that I do.  His kind and caring nature shine through when he is with our kids and his loving demeanour has always made them feel safe and secure in the hospital, especially when things have been difficult.

His compassion always allowed him to connect with our rare disease families, and his empathy allowed him to grieve alongside us.   He understands us and recognizes how difficult these journeys are.  At the same time, he always gives families the strength to keep fighting, encouragement and hope that will sorely be missed by us all.

Julian has also led the charge for our children to get access to expensive treatments – treatments that save lives.  He’s traveled around the world presenting to patient groups, organizations, and government officials.

image2-2Julian has led clinical trials and helped pioneer new treatments for our kids.  I was with him at a Denver Patient Symposium recently and he passionately told the crowd that “It’s nice when we have medicines that make us get better.  But it’s just as important to have medicines that prevent us from getting worse.”  To me, that is at the heart of every battle I’ve fought throughout the past decade for our kids, and Julian eloquently summed up the need for us to have access to treatments for our kids in one powerful sentence.  He’s like that – inspirational and uplifting, yet modest and humble at the same time.

Julian has championed our childrens’ causes, he’s tirelessly joined our battles.

He’s been consoling and impactful.  And has made the world a better place for us all.

Julian has been a life changer and a life saver.

And Julian will be greatly missed.

Farewell, Dr. Raiman.  Thank you for all you’ve done for my son, our family, and all the families that The Isaac Foundation has been lucky enough to be involved with.  You are a true hero to us all.

With Love,

The Isaac Foundation