Do you know about Spinal Muscular Atrophy? You should.

Let’s talk about SMA – Spinal Muscular Atrophy.  It won’t take long.  And I’m not asking for money.

I first talked about this horrible disease affecting children a year and a half ago when I met sweet Ryan Hawn and his parents, Jenn and Chris. I wrote about his life, the disease, and eventually, when they lost him at only 6 months old.

Now, I want about 5 minutes of your time.  Watch the videos below.  Grab some kleenex for the second one. And then head here to make a difference just by casting a vote.  No hassles, no pulling out your credit card. Just you – taking a virtual stand with families who watch their kids fight SMA.  This fight is not only for the kids who have SMA now, but for the thousands who will have it in the future.

This next video will (make you cry)  share a little of the heart and motivation behind the Gwendolyn Strong Foundation.

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Ryan Michael Hawn – 1/27/09 – 7/28/09

There are small, wet circles covering the surface of my black desk. 

I didn’t even notice them until my typing arm shifted through what felt like a spilled glass of water.

After a second of confusion, it made sense. I am writing through tears.

layingbedRYAN MICHAEL HAWN
1/27/09 – 7/28/09

Ryan Michael Hawn passed away overnight.  He was this sweet little guy.  I introduced  you to him here. (Short video included) He was struggling through Spinal Muscual Atrophy - trying his hardest to give his parents and older sister every single minute he could. Yesterday was Ryan’s 1/2 birthday.  He was only 6 months old.  In that tragically-short time he gave his parents millions of amazing memories, touched thousands of people, and has encouraged hundreds to sign the petition to fight SMA.

I knew him for only a small portion of his short life. 

I can’t even imagine.

I am praying, deep down in my heart, that Ryan’s parents, Jenn and Chris, and his big sister Charlotte, are surrounded by enough love to guide them through this.

If you get a chance – would you sign the petition to help end SMA ?  Maybe someday, families won’t have to lose a child to this disease.

Edited to add: I just spoke with a mutual friend.  Though Jenn and Chris were terribly worried Ryan’s passing would be physically painful for him, it was apparently very peaceful.  He lay in bed between the two of them.  He opened his eyes, smiled and went to sleep.  This is how Jenn hoped he would leave them.  I am grateful her one small wish was granted.

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. [Read more...]