SMA Awareness Month

For those of you who read my posts in August last year, I did a whole series on having Spinal Muscular Atrophy (SMA), and the different ways it’s affected my life. I’m not sure yet if I’m going to have any sort of series, but I wanted to take a day to talk a little more generally about what SMA is and what it’s meant for my life over the years.

SMA is a genetic, neuromuscular disease. Even though there was no family history of it, my parents were both (apparently) carriers of the recessive gene that causes SMA, and my sister and I both have the disease. It means that my muscles are weak, overall – I’ve never been able to walk, but it’s not just my legs that are weak, it affects all the muscles in my body.

This means it also affects my lungs – I have a much lower lung capacity than a person without SMA. A cold can easily turn into pneumonia for me if I’m not careful. So as a kid, I spent time in the hospital – we called it “Hotel Children’s,” where they got the Disney Channel, which we didn’t get at home at the time. And I shared here in this post about what the flu can mean for me.

But my life wasn’t all medical appointments and hospital stays. Whenever people ask me what it was like, it’s hard to explain, because my life is the only life I’ve ever known… it’s just normal to me! I went to school like everyone else, and had lots of sleepovers (usually, at my house) and time hanging out with my friends. In middle school, my friends at I all put body glitter all over ourselves to get ready for “Teen Center,” which was the dance at our school (that also had indoor rock climbing, a movie, a bingo room, airbrush tattoos… a bit of a free for all). I even went to Camp Soles, the annual trip for eighth graders (along with my mom as chaperone), and had a good enough time that my friends and I went back as teen chaperones the next year.

So while SMA definitely affected me growing up (and still affects me now, of course), I lived a more “normal” life than you may have realized! I think this is important for people to realize. I’ve had a few parents of children with newly-diagnosed SMA reach out to me lately, especially since my name and diagnosis have made the news. And I love it so much when the Internet connects me to someone affected by SMA in any way – I think community and communication are so important! And while clearly, each person’s life with SMA is different, I do want people to feel some hope that their life, or their child’s life, doesn’t have to be totally defined by the diagnosis of SMA.

This Post Has One Comment

  1. Dish

    Heather you are Amazing!! Thank you for sharing your story. You are strong and beautiful!! I know you will do of Fantastic job as Ms. Wheelchair U.S.A.!! Congratulations!!

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