31 Days of SMA: Why I Have Vowed to Fight for Change

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Day 17 of 31

This is Kyra Richardson’s story:

Growing up with a SMA, I was often in and out of the hospital. At age 7, I had spinal surgery because my back was curved like an S. I had breathing problems and needed treatment because my spine was hitting my lungs.

When I got home from the hospital, they prescribed me medicine I was allergic to, and my back had to be opened up again. I was rushed back to the hospital, and the surgery was redone.

After the healing process, doctors wanted me to start therapy. I did, and they discovered that my legs were contracted into a sitting position. They wanted to stretch them out all they way to see if I could stand in a standing frame. Fast forward, and they got my legs straight and me into a standing frame, but to get there, every week I had to endure multiple knee fractures and the worst pain imaginable. But now my legs are straight and I have no breathing problems.

As a kid, I didn’t know what a disability was, as that word was never used around me. I never saw anyone my age in a chair, and I kind of figured that something was different about me.

Early in school, there were other kids with disabilities, and nobody treated us differently — until I switched from a city school to a suburban one. There, I noticed how the kids with disabilities were placed in classes in a separate part of the school. At the city school, everyone had been together and were treated the same. My dad had to fight to get me out of the special needs classes and into general education classes.

This change was dramatic for me because I was so far behind. I had to work extra hard to keep up. That’s when the bullying started. It made me ashamed of myself, and I didn’t understand what was happening. High school was a traumatic experience for me, and I didn’t feel I had anyone to turn to for help.

All of this convinced me that I needed to try to make a difference in the lives of people with a disability. We shouldn’t have to fight to live a quality life.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.