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.Last weekend, my cousin, sister-in-law, and I had a girls’ night out. We picked a spot in a cute, historic town, ordered espresso martinis, desserts, and cheered a summer well spent and our not-so-little cousin turning 21. I cherish moments spent with my family, for I understand how blessed I…
“Raise your hand if your return to reality has been a struggle.” That was the text I received moments after being set up on my phone to write this column. I had to chuckle. My best friend was referring to the weekend we had just spent at the coast…
In case you missed it, I skipped writing a column last Friday. I wouldn’t say it was by choice, even though one could argue that technically I requested the week off. If it had been up to me, I would have written that column. I would have…
As I write this column, only 11 days are left before my nonprofit organization hosts its 10th annual gala for spinal muscular atrophy. Eleven. And while 11 has always been my lucky number, as I glance at my to-do list I’m reminded there really isn’t anything lucky about it…
There’s a famous quote by Randy Pausch in his book “The Last Lecture“ that says, “We cannot change the cards we are dealt, just how we play the hand.” My heart holds so much truth in this quote because I often envision my life with SMA like building a…
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…
