Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.The delicacy of my health is no joke, but during a recent appointment with my ear, nose, and throat specialist, I had to laugh. In addition to living with spinal muscular atrophy (SMA), a rare disease, I’d just learned I was also living with one of the…
While living with spinal muscular atrophy (SMA), losing physical abilities is expected due to the progressive nature of the disease. Yet, even though I’ve been accustomed to this grim prognosis, sometimes I’m caught off guard. Although I know my muscles inevitably weaken and my abilities diminish over time,…
Living with spinal muscular atrophy (SMA), I’m often met with this question from others: “How do you do it?” Upon learning how much goes into living a life full of health issues and weakness as well as SMA’s unpredictable nature, many often want to know how I manage…
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I thought it’d be different. I thought I’d be celebrating my 30th Spinraza injection with excitement and…
After closing the tab on my browser, I couldn’t help but wonder how much progress I’d made in the past year that I failed to notice. My words on the screen were there in plain sight, from a moment when life felt so different to me. It was hard to…
If you’ve perused my columns in the past, you’ll know I’m a big advocate for teaching children about disabilities. As a woman in a wheelchair who looks different from the average person, I’ve been the subject of glaring stares, mind-boggling comments, and the occasional finger-pointing from children. That…
Late last year, I embarked on an unexpected journey to self-discovery. The past several years had been an uphill battle with my health, each day bringing its own relentless fight. The good news was that I was surviving whatever conditions came my way. The bad news was that I…
When I was a little girl, I loved searching for dandelions at the first sign of spring. My mother would pick one off the ground for me, and I’d excitedly use all my strength and breath to remove the fluffy seed ball, or blowball, from the stem. One by one,…
There’s a memory that has sat quietly in the back of my mind for a while. After it happened, I wanted to write about the rawness and reality of how I felt in the moment. Yet, a gut feeling told me otherwise. The story wasn’t finished yet. There was more…
Peeking up from my pillow and seeing that it was 4:55 a.m. was an unpleasant surprise the other day. I had slept only a whopping 20 minutes longer than the night before, and it was becoming a pattern. Having fallen asleep around midnight, my body was riddled with exhaustion, but…
