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.“Well, Alyssa, I’ve certainly experienced many firsts thanks to you,” my mother said as a nurse untied the surgical gown from her back. I’m sure we all have our fair share of firsts when it comes to living with a disease in which the unexpected becomes the expected.
Some of my biggest lessons have come from my toughest messes. To me, that’s the best way to grow. It’s the best way to move forward and come to terms with the challenges and obstacles people with SMA face on a daily basis. However, being able to learn…
For the Silva family, cleaning out the basement in recent weeks has become a trip down memory lane. Pictures strewn in boxes tell stories of my childhood and how my parents did everything in their power to give me a “normal” childhood. Old textbooks remind of all the…
As a child, during the summer months, the neighborhood kids and I spent our days on the corner of my yard selling lemonade to passersby. My mother would help us prepare the drinks, she’d supply the napkins and cups, and she’d write out on a big poster…
My parents say it was another beautiful, sunny Saturday in April. They had two perfect children, a boy and a girl, like they had always wanted, and they couldn’t wait to finally start a family together. However, the merriment that usually filled the room suddenly stopped on that…
Coming to you, live from my couch and in yesterday’s clothes, this column is all about how I made a mistake. Truth be told, I’m not happy about admitting it. But with these words and with these columns, I made a promise to myself to always show up…
Growing up, there was a big bay window in the house where I lived. It overlooked the front yard and gave a great view of the surrounding houses and outside world. The sunlight shone through it, making anyone who sat next to it feel warm and happy. To…
This morning, I woke up to a most unusual greeting from my mother. “Good morning. I want you to stay out of Massachusetts,” she said while removing the BiPAP from my nose. Typically, she knows not to speak to me when I first wake up in the morning.
As Ella Fitzgerald and Louis Armstrong softly sing Christmas classics in the background, I ask my mother to set me up on my iPhone so I can gear up to write another column for you this week. There’s something both terrifying and wonderful about a blank page before…
Free time is a beautiful and wonderful thing to have in a day. It allows time for the activities we love most, breaks up our days so we’re not wearing ourselves thin, and gives a moment to rest and re-energize. It also is a rarity in my life…
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