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How a simple page turn became a big victory

As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm. However, my hands and fingers don’t always cooperate when I want to read. Something as simple…

On either longer travels or day trips, I aim to have fun

I’ve written plenty about how hard I work to keep healthy and prevent emergencies. I work just as hard to figure out new ways to have fun, immersive experiences that can accommodate my physical challenges. Last year for SMA Awareness Month, I wrote that my dream was to travel across…

My life of privilege while living with SMA

What do my doctors and dates have in common? It’s that I’ve asked most of them this question: “Am I the first person with SMA you’ve met?” Surprisingly, I’ve heard a few doctors tell me no. I may be the first adult SMA patient they’ve treated, but they’ve seen…