Note: This column describes the author’s own experiences with Evrysdi. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I was expecting my insurance to turn up their nose at renewing my Evrysdi (risdiplam) prescription to treat my SMA.
In the late summer of 2021, we took a family vacation to Orlando, Florida. Our resort had an accessible outdoor pool, so we couldn’t resist spending a sunny morning relaxing in the glittering water. As I sat in my mom’s lap, my smaller, floppy body held upright by…
“Why is she in a wheelchair?” is one of the most common phrases I hear when I’m out and about. Funnily enough, I’ve grown so accustomed to staying home these past few years that I almost forgot what it felt like to be the subject of someone’s curiosity. But…
A surprise pregnancy hurled my husband, Randy, and me way off guard in the fall of 1996. There were gasps aplenty when our peeps received the news, as we were both in our 40s and already weary of hawking fundraiser wrapping paper. Our bonus baby, Jeffrey, arrived on May…
When I was a little girl, I had many life-threatening hospitalizations, the first at 16 months of age. Ten months after I was diagnosed with SMA, I experienced my first bout with respiratory syncytial virus and was intubated for weeks. Though I was too young to be…
Speaking seems like a simple act: You open your mouth and say words. The end. But in actuality, it involves a number of mechanics: oxygen flowing through your lungs, up your trachea, and through your larynx, creating sounds that are then shaped by the voluntary muscles of your palate,…
When I was in middle school, I became acquainted with Ponyboy, Sodapop, Johnny Cade, and the other “Greaser” boys from the pages of “The Outsiders.” Since its publication in 1967, S.E. Hinton’s seminal novel has continued to resonate with generations of teenagers and young adults from all walks…
My dad and I have a long-standing tradition of rewatching old TV series. We’ve binged everything, including “Merlin,” “Stargate SG-1,” and “Star Wars Rebels,” over the years. Right now, we’re savoring every single episode of “Agents of S.H.I.E.L.D.” for the third time. “Agents of S.H.I.E.L.D.” premiered in 2013,…
My feeding tube became a part of my life amid a series of illnesses that required hospitalization when I was 13. I’d lost a dangerous amount of weight as my body burned through every available resource in an attempt to fight off infections. I was far…
Whenever I think about how I started driving my wheelchair at 3 years old, I always wonder, “Whose great idea was that?” I accidentally crashed into furniture. I made plenty of dents in the walls learning how to navigate my new set of wheels. I even accidentally knocked down the…