Last Thursday I met the sweetest little guy in the world. His name is Ryan. I am lucky to have met him.
Ryan has Spinal Muscular Atophy, a disease I had never heard of until the Hawn Family came in to my life. And now, I can’t get Ryan, his parents Jenn and Chris, or his little sister Charlotte, out of my head.
Ryan was born premature, but for all intents and purposes, he was perfectly healthy. As Ryan approached the 2 month mark, things began to change: his muscle tone deteriorated, he had trouble eating and his breathing became rapid. On May 27th, the day Ryan turned 4 months old, he was diagnosed with the disease.
SMA affects 1 in 6000 children. There is no cure and very little treatment.
So, Ryan is at home. Every moment Jenn and I spoke, a small piece of my heart broke away. This woman, this mother, stares into that little face every single day – knowing she can’t have him forever. I can’t claim to know what that feels like.
But I can scream from the mountain tops that is just isn’t fair.
I can tell you I am in awe of a young husband and wife, leaning on each other. I can tell you I ache as I write this. I can tell you Ryan will have a lasting impact on everyone he met even for a moment – including me.
When I left the Hawn’s house, I sat in my car and cried. I cried for the loss Jen, Chris and Charlotte are suffering now. I cried because Jenn told me she can’t even hold Ryan because it is too uncomfortable for him. I cried for what is to come. I cried because, like them, I have absolutely no power to stop it.
(This petition is in support of the SMA Treatement Acceleration Act, which was initially introduced in 2007 and was reintroduced in 2009 in the current session of the United States Congress. The passage of this legislation will help END SMA, the #1 genetic killer of young children, and provide groundbreaking data for SMA and other disorders, including the muscular dystrophies, ALS/Lou Gehrig’s disease, Friedriech’s Ataxia, Fragile X syndrome, and Huntington’s disease among others.)
It would be wonderful if you would sign it – and pass it on. If there is the chance to help another child like Ryan, a chance to keep another family from suffering the way the Hawns are….how can we not?
On Saturday night, I am honored to be MCing a fundraising event for Ryan. I’m not sure I’m worthy, but I am honored Jenn and Chris asked me to do it.
The family pictures you see in this post were taken by Darcie Deneal of The Jeremy Project – a not-for-profit photographing children with special needs and circumstances.