Do it for Ryan
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.
But I can ask you to do one little thing. Jenn has a beautiful website - on it she is chronicling her family’s journey. On the right hand side, there is a petition:
(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.
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What a beautiful family, a beautiful post and wonderful way to help a family! Thank you for opening our eyes Danielle!I am in!
Thanks so much for posting this, I missed the show earlier, and didn’t get the links! Headed over right NOW!
Thank you for introducing us to Ryan. As a community of blogger Moms and Women, it is a must that we sign this petition. As a mother, I could not imagine going through what this family has gone through. I was once told it takes a community to raise a child and I, and hope others will stop by Jens blog and send a virtual hug.
Sometimes we get wrapped up in our own lives and forget about the suffering that others are going through. This was a good post. I signed the petition and will keep them in my prayers! My heart and love goes out to the family! Thank you for the beautiful post!
Thank you for writing this and capturing the essence of this lovely family. Knowing her story and following her journey really opens up our eyes to how precious life is.
What an amazing story and I am glad you shared it with us. I will definitely be signing that petition. This is NOT fair.
Well written.
One of my best friends lost her baby at 9 months to SMA Type 1. Since then, I’ve done all I can to educate and donate toward the effort to find a cure. (Including signing the petition and tweeting about it repeatedly). Most people don’t know that it’s a relatively common genetic disease and that genetic testing can be done to see if you’re a carrier.
Ryan is adorable and I wish him and his family well.
How utterly heartbreaking. Every time I see a family going through something like this I look at my own two children and just wonder why I have been so blessed. What a weight, what a beautiful burden of responsibility. I am so unworthy in the face of God’s grace. I guess all those of us in this position of grace can do is what you are doing–make the plight of those less fortunate known, pray without ceasing, and sign those petitions.
Thank you for sharing. What a beautiful family and sweet baby boy. So sweet. NOT FAIR AT ALL. My heart goes out to them.
This is a wonderful story and special family. What a blessing that they asked you to be a part of the event. What an honor! Prayers are with the family.
D… I’m crying.
Thank you for sharing this. I’m going to sign that pledge now. You are amazing.
i was just sent this, jennifers blog from the day sweet ryan passed away., July 28th, 2009. http://thehawnfamilyweekly.blogspot.com/2009/07/perfect.html
this courageous mother’s faith and love and experiences have me in a puddle of tears. I had to share this with you all. please read this… and say a prayer of thanks for all the love that is in the world…even with (and at times…even in spite of) all the pain. blessings to you danielle for cover ing this amazing family and their life inspiring story.
Suzanne / Zen Mommy