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 other day, I read one of my old columns and thought to myself, “Honey, if you only knew what was to come.” My January column, “Please Stop Glorifying Being Homebound,” was all about how I spend every winter hunkered down in my home to avoid…
My body has never handled stress well. Come to think of it, does anyone respond well to stress? Typically, my body reacts to stress in the form of gastrointestinal issues. This comes as no surprise considering I’ve dealt with acid reflux disease…
I was scrolling through Instagram recently and found myself growing increasingly bitter about what I saw. People were congregated on beaches, packed like sardines in bars, and carrying on with their lives as if a global pandemic wasn’t happening around them. At this point, the novel coronavirus needs no introduction.
Another day, another opportunity to go through a box of tissues to wipe the drainage coming out of my ears. Is that how the saying goes? That may have come across a bit grotesque, but unfortunately, it is my current reality. In my last column, I…
Recently, I learned that zebras are the official symbol of rare diseases. I have a rare disease, and my unique characteristics — such as a zebra’s stripes — serve a distinct purpose in my life. But when I think of zebras, I think of one brilliant doctor, whose comical bedside…
The SMA News Today Forums heard it first, but I’d like to introduce you to my brand new Permobil F3 wheelchair. Her name is Rizzo, and yes, I am one of those crazy people who assign genders and names to their vehicles,…
All my life I’ve been freakishly in tune with my body. It sounds like a great quality to have, right? I’ve always been hyperaware of my symptoms and can spot when something in my body feels off. This bodes well when it comes to viruses and other types of illnesses…
As I write this, I’ve been home for 11 days. Actually, let me rephrase that. I haven’t left this house so much as to go outside to get some fresh air, feel the sunlight gently grace my skin, or see what the outside world has been up to for the…
For the past few weeks, social media feeds have been inundated with posts about the #10yearchallenge. It’s a way for people to showcase transformative photos of themselves. Some are from 2009 and others were taken this year. I decided to hop on the bandwagon and shuffled through old Facebook…
This time of year is my family’s time to shine — literally. Our house sits on a hill on a narrow street that runs parallel to the main road. Separating these two roads is a small patch of woods, leaving little to no privacy for our cozy abode when the…
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