23 May, 2015 mcfadyena

Race Weekend – For Jack

Well – race weekend is here and we’ve all arrived in Ottawa to Run for a Reason. We’re here to find a cure for MPS. I’ve done more training than any other race I’ve been in, and have been running for a lot of different kids during that time. It’s our brave kids that keep me going – both in my drive to find a cure and while I’m out there trying to reach the finish line.

In everything I do, I have my son Isaac as my inspiration. And this race is no different – race day is for him. But I’m also running for another little boy, someone I love dearly, but someone I can’t help but feel I’ve let down. I’m running for the one boy that I haven’t been able to win the battle for, the boy who keeps me up at night with worry, sorrow, and guilt. I’m running for you, Jack Fowler, with a heavy heart but with resolve to keep fighting for you; with a promise to do whatever it takes to help you win your battle.

We’ve been lucky to play a small role in the lives of many kids and families during the past 9 years – something I’ll always be proud of. We’re closing in on $1 million donated to research projects aiming to find a cure. We think we’re close to a cure for MPS VI, and the incredible MPS II Research Fund is currently funding 3 promising Gene Therapy projects. We’ve taken on drug companies on behalf of our kids, we’ve won battles big and small. But for Jack, we continue to come up short and hit barrier after barrier – barriers I’m finding difficult to break through, jump over, or move around.

I feel the weight of this inability to help Jack more than ever, and I feel like I’ve let him and his family down. When I first got involved in the fight to save Jack, I promised I would do everything in my power to get him the treatment he needs. We met with Shire, launched public campaigns, hit the media circuit, and shared his story around the world. Today, a year and a half later, we still haven’t found the right way to help, and I’m heartbroken that we haven’t been able to access treatment yet.

Oftentimes, parents connect with me as a last hope – the last person to turn to in their battle to get treatment for their kids. And I’m always here to help. But so far we’ve failed, and I feel guilt and shame, broken and hurt. And I feel it all strongly because if I can feel proud for those that we’ve been able to help, I should also accept the pain that comes from those that haven’t been successful in helping yet.

For Jack, like other kids, I’ve always felt like I was the last hope – if everything we do isn’t successful, then there would be nowhere else to turn. But I’m wrong – I’m not the last person that can help. That last hope doesn’t sit with me. The last person that can help is Flemming Ornskov, CEO of Shire PLC – the drug company that makes the treatment Jack so desperately needs. Flemming continues to act as judge, jury, and executioner, and he truly is the only person who can step in and make a difference.

So this run is also for you, Flemming. Dedicated to you as a final plea to find it within yourself to be brave – to go out and help those you purport to care about most as a company. This run is for you, Flemmming, in hopes that you see that this guilt I bear should be shared by you – that your legacy as a person and a businessman will always come back to this case – to this little boy – and the decisions you make about his future. It’s for you, and for Jack, with a promise to you both that I won’t ever quit the fight to save him, no matter what road that battle may take me down.

You’ll be with me this weekend, Jack, like you’re with me each and every minute of every day. You inspire me to work harder, fight stronger, to never give up. I promise I’ll run to the end of the road for you, and beyond.

#Hope  #SaveJack

If anyone out there would like to support our Run – our Hope for a cure – please click through and spare what you can.

 — with Jamie Lynn-Brooks FowlerDeb Cehak Purcell and Kristin Higginson.

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