Columns

I Feel Gratitude in the Wake of Zolgensma

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…

Let’s Foster More Acceptance

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…

On a High Note: Ella Finds Her Voice

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.

Happy to Help: I’ve Found Fulfillment in Volunteering

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…

No Accessible Room at the Inn

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…