13 May, 2015 mcfadyena

Run For A Cure – For Ellen

We’ve run a lot of places together, Ellen and I, and I can’t imagine a better partner to be at my side on this long road than you.

Our latest journey has taken us to New Orleans, to the American Society of Gene Therapy Conference, as we search for a cure for our son and all the other families battling MPS throughout the world. This training run took me through the streets of NOLA, out past the insanity that is Bourbon Street and through the historic French Quarter. It started out as a short run, but kept getting longer and longer as I thought about the significance of our trip here – someone at this conference holds the future of our son in their mind, in their lab. We need to find them, fund them, and make our cure a reality.

Ellen is my partner in life, my best friend, the mother of my kids, and the strongest person I’ve ever known. She’s the reason why our Foundation has grown, why we’ve been able to achieve what we have and help the kids we’ve been so lucky to help. She’s the person I laugh with, cry with, grieve with, and the only person I can talk to about anything.

It sometimes gets hard to talk about my own son with other families – I’m still coping with diagnosis, still in disbelief that this is where our life has taken us. But running The Isaac Foundation sometimes makes me feel I have to be strong for the other families out there, which usually means I hide the fear I have inside about where my own journey with MPS will take me. I’m lucky to have Ellen with me to talk to, share those fears, and to help me see how close we are to winning our fight.

I’d like to say that my final run on Race Day is for Ellen, but that race and that run is reserved for someone else. She’ll have to be content with this run being for her – the one through the streets of New Orleans while we are on our latest journey together – an important one toward finding the cure for our son.
I love you, Ellen. More than ever before.

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

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