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Thursday, September 16, 2010

This is SMA

Today some of my favorite people are blogging together, simultaneously--it's an "SMA Blog Party". Of course, there isn't much to celebrate. Severe physical disability isn't the stuff that balloons and clowns and ponies can fix (or is it? hmm). I wish I didn't have a reason to know these people, though. I mean, they are perfectly fine individuals--awesome people that I'd be lucky to be friends with under traditional circumstances--but I only know them because our kids suffer from the same terminal illness.

That figures, huh? "Great to meet you, but I'm sorry I have a reason to meet you at all." That's what I tell other parents of kids with Spinal Muscular Atrophy. I admit, that sounds pretty shitty of me to say, but they always understand. They understand because their other, pre-SMA friends don't. And they don't want to know me anymore than I want to know them. I don't want my kids to suffer a debilitating and ultimately terminal disease anymore than they do. But you know, if wasn't our kids then it would be someone else's kids. So I set aside my typical "woe is me" point of view for today.

You want compelling? Read about Andy here.

If you want to learn more about SMA, certainly visit Look for the new video I posted from our recent MDA telethon segment.

If you want a tiny slice of life with kids in wheelchairs, visit this gem of an article.

I was granted the opportunity to guest post on my friend Debi's blog, in honor of today's SMA Blog Party. Check it out.

What I'd really love your support in is regarding the Jimmy Johnson Helmet of Hope contest. You don't have to create a profile or log into anything. Just click here, scroll down to select the Gwendolyn Strong Foundation, enter the security phrases, and hit enter. Piece of cake. You can do this daily until the end of September.

is the same age as my twins, but she has a more severe form of SMA. The amazing thing is that the same cure will help all of them, and a cure for SMA may unlock cures or treatments for other diseases, too. So do me a solid and vote to give the Gwendolyn Strong Foundation $20,000. All the money goes towards funding cure-focused research. The research community agrees that we're on-the-edge-of-our-seats close to a cure for SMA. Let's make it happen, my friends. Click, vote, and let me know that I can add you to my long list of people who support the Byrdlets and our other SMA friends.


  1. the guest post is up. I pray it helps to bring you in many votes and dear God, the cure.

  2. Your dear children are PRECIOUS! You are a strong woman! Hugs and prayers to you!

  3. We WILL make it happen! Keep on blogging, I love reading it all. God Bless your whole family!! They are just gorgeous : )