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.I once knocked over our Christmas tree when I was 3 years old. To this day, I’m not proud of it, and frankly, I’m still a little traumatized by it. I was simply trying to get a good view out the bay window to see our neighbor’s…
Does anybody actually like the sound of their own voice? Unless you’re a gifted singer, that was a rhetorical question. I come from a musically inclined family, so they tend to say yes when I ask this question. But for me and many of those outside my family, the answer…
I did something that I’m afraid to publicly admit. Sure, I did it willingly. And in this corner of the internet, I share my life openly and honestly with those who are willing to read it. So it only seems fair that, despite my hesitancy to share this with you,…
Do you ever look back at experiences from when you were younger and view them differently as an adult? I find myself doing that quite a bit lately. Kids look at life through rose-colored lenses. I see that in the way my little niece and nephew are…
It was a normal Tuesday like any other. At least, that’s what I thought. The mundanity quickly vanished when my nasojejunal (NJ) tube unexpectedly clogged. My specific feeding tube can clog easily. It’s the most narrow tube available, which makes me more prone to…
“Alyssa, I’m afraid I’m stuck between a rock and a hard place,” were words I never wanted to hear a doctor say about my health. Until, unfortunately, it became my reality a couple of months ago. For the second time in two weeks, I was lying on a hospital bed…
The other day, I had an appointment at the hospital to change my nasojejunal (NJ) feeding tube. Since the tube is placed in my jejunum, a part of the small intestine, and not my stomach, these procedures have to take place under fluoroscopy…
Before I began writing today’s column, I recorded video interviews for a rather well-known brand here in the United States, focusing on my role as chief creative officer at an adaptive fashion company. While I don’t necessarily love public speaking, the larger issue at hand is often finding a…
When you’re living with a complicated disease such as SMA, it’s half the battle to have a knowledgeable and trustworthy medical team helping to manage everything. I’ve always been fortunate in that respect. I know how difficult it is to build a solid medical team, but I’ve somehow collected…
Whether it has directly affected you or not, chances are you’ve heard about the formula shortage happening in the United States right now. It’s a serious issue, one that has people rationing what they have and living on a prayer that they’ll continue to be able to…
