Everyone and their mother is talking about Zolgensma (AVXS-101). Just like what happened with the release of Spinraza (nusinersen), people everywhere are sharing links to news stories on the groundbreaking new medication. I feel more or less the same as I did in 2016 when…
Columns
Last summer, I wrote about how having SMA is apparently an open invitation for people to stare at me. It sounds crazy, right? It’s almost as though people in wheelchairs are about to go extinct, so passers-by need to get a good, hard look at our kind. OK, I’m…
Ella’s sister, Ava, plays the violin and sings in the school choir. She practices her violin at home almost every day. Henry, their brother, plays the piano and practices as well. In fact, he has a piano in his bedroom and plays while we’re getting ready for bed.
I’m a writer. I recently finished the first draft of a 47,000-word novel by hand because I can still write manually — and if you don’t use it, you lose it. And now I’m writing another book. By hand, again. In…
Those of us who have SMA live surrounded by other people. We rely on others to bathe us, get us dressed, help us eat, move our hands, drive us to work, and to be available for any other tasks we may need assistance with throughout the…
Since the age of 3, I’ve been attending Turnstone, a local organization that runs a center for children and adults with disabilities. Over the years, I’ve benefited from the many services and opportunities at Turnstone, including joining a cheer squad, attending teen socials, and participating in therapy and adult day…
Heavy goggles cling tightly to my eyes as I try to keep my balance on my mother’s lap. Even though she holds onto my waist, with the weight of the goggles, I have to carefully concentrate on holding my head up. I have been in this position about a…
Ella’s mom, Lindsay, came home from the Marianjoy Rehabilitation Hospital over the weekend after having her lower right leg amputated because of a foot infection that lasted four years. While Lindsay was gone, Ella had to rely solely on me for her needs. And…
Second in a series. Read part one. No one really expected me to have a job. My advisors in high school didn’t like my career choice. I wanted to pursue being a writer. I wasn’t going to college. No, thank you, I’d had…
I now know what it was like for Mary and Joseph when they were trying to find a room in Bethlehem. While we didn’t have to resort to sleeping in a manger, my parents and I had quite the adventure searching for an accessible hotel room in the…
