Life, One Cup at a Time - a Column by Alyssa Silva

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.

Staying Organized Helps Me Simplify Life With SMA

Before I dive into this column about how the art of organization keeps my life balanced, I believe a disclaimer is necessary. After all, no matter the number of “Queer Eye” episodes I watch and self-help books I read, or the amount of inspiration I get from…

Cherishing Togetherness During the Holidays

Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the classic Claymation movie “Rudolph the Red-Nosed Reindeer.” To complete our viewing experience, my…

Being Rare Is All I’ve Ever Known

If you were to sort through my medical records, you would notice that some of the files list my diagnosis as “SMA I/II.” I had a good chuckle the first time I noticed this. After all, there is no such thing as spinal muscular atrophy type 1/2. I was originally…

Living With SMA Taught Me to Think Efficiently

Something you may not know about me is that I have a tendency to make a lot of impulsive decisions. Of course, when it comes to more complicated and serious matters that require tougher decisions to be made, I take my time and carefully examine the circumstances and craft well…

Glam for the Scan: How One Outfit Changed Everything

While I can’t speak on behalf of every medical professional I’ve come across in my lifetime (truth be told, that’d be quite a large number), I wouldn’t be surprised if they thought I didn’t own many clothes. I wouldn’t blame them. After all, I’ve been wearing the exact same pair…

Why I Welcome Children’s Curiosity About My Disability

A few years ago, I wrote about the need for more understanding and awareness about disability. No matter how many years have passed or how much has changed, I’ve always felt strongly that this topic should be included in everyday conversations about disability. In that column, I shared…

The Challenges of Making Friends as an Adult With SMA

Making friends as an adult is hard. At least, it always has been for me. After all, I’m an introvert. I like keeping to myself. But friendships are important to my emotional well-being, and I cherish them deeply. However, once I graduated from college and started working…