13 July, 2018 mcfadyena

This Beautiful Life…

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

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