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.While I understand that inanimate objects cannot have a mind of their own, there’s a lamp in my bedroom that would kindly disagree. I’ve had this lamp for a couple of years now. It’s set to a timer that turns on every night at 11 p.m. and stays lit until…
Autumn and I have always had a complicated relationship. Its golden hues, pumpkin-patch allure, and cozy feelings entrance me like no other. Yet, amid this season’s spell lies one hard truth to accept: Winter is coming. For those of us living with spinal muscular atrophy (SMA), this means more…
In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs of weakness. I couldn’t roll over, wasn’t able to hold my head up, and had minor…
As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm. However, my hands and fingers don’t always cooperate when I want to read. Something as simple…
“Don’t worry, we all got the Alyssa lesson before we started working here,” the new fellow joked after having completed his second nasojejunal (NJ) feeding tube exchange on me. Though everyone in the room had a good chuckle, there was also some validity behind it. Given my scoliosis, hiatal hernia,…
As much as I try to shove this feeling aside, there’s a part of me that quietly dreads this time of year. Amid the beach days, hot weather, and all the other joys this season brings, I simultaneously face a significant challenge: The medical team at my hospital is changing.
If you’re American and have attended a baseball game, then I imagine you’ve probably heard the song “Take Me Out to the Ball Game.” Known as the most beloved song in baseball, this classic tune has been an anthem of summer for decades. For most, it’s joyous. It’s…
“I feel like my body is gaslighting me,” I said to my dad in frustration after checking my MRI results. While I was hoping to get some answers, there in plain sight were the words “findings are unremarkable.” Of course, this news was ultimately good. Unremarkable findings meant nothing serious…
Last December, my brother kept badgering me about what I wanted for Christmas. I was so sick with a respiratory infection at the time that my only focus was on getting better, not a present. Fighting any kind of respiratory illness can be life-threatening for someone living with…
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement recently when they came across a large trash bag filled with some of my stuffed animals.
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