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 title of this column may be a tad deceiving — so allow me to clarify. My wheelchair only goes 6.2 miles per hour, and when you have an irrational fear of birds and are fleeing from a turkey that is chasing you, you realize that there’s nothing fast about…
Sometimes, I wish it were easier. I wish it were easier for doctors to pinpoint the root cause of my mysterious daily symptoms. I would like to receive answers that would better explain the reason behind the health issues that I’m enduring. Aside from giving me…
As I was staring at a blank screen preparing to write this column, my little cousins Jackson and Mackenzie, who are 8 and 6 respectively, were playing with my nephew’s motorized car in my living room. Our fathers were on the back porch having a drink…
Out of context, telling people that I willingly drive for an hour to get a good cup of coffee sounds pretty ridiculous. After all, think of the countless coffee shops I must pass en route to my destination. (I live in New England. If there isn’t a Dunkin’ on every…
I believe that the smallest changes can often yield the most impactful results. Someday when you reflect on your life’s culmination of little moments and modest actions, you will realize they’ve mattered more than the grand gestures. Just like the tiniest pebble can create a ripple effect so too can…
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…
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…
Do you ever have moments when a wave of gratitude hits you in the last place you’d expect? They are the kind of moments that make you stop and take inventory of your life, the kind where the littlest details suddenly become meaningful and significant. I’m a big fan of…
Driving home from Boston one evening, I witnessed the sky paint a vibrant sunset as we cruised down the highway. Bright pinks and oranges swept across the view from my window as the radio blared through the speakers. A dear friend was in the driver’s seat, and as the sky…
A good way for me to gauge whether or not I’m due for another Spinraza (nusinersen) treatment isn’t by looking at a calendar or counting back the number of weeks from my last dose. It’s simply by feeling it. I’ve noticed a certain cyclical pattern in my experience with Spinraza,…
