Last December, my brother kept badgering me about what I wanted for Christmas. I was so sick with a respiratory infection at the time that my only focus was on getting better, not a…
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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…
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,…
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…
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…
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…
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…
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…
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…
I was recently strolling through the best-sellers section of a bookstore and couldn’t remember the last time I had set foot in one. I had just stopped in for the Starbucks coffee. However, while…
In this season of giving thanks, I keep reflecting on the importance of gratitude. Gratitude greatly impacts our lives, but as someone with SMA, I’ve found the concept easier said than done. At the…
It is truly the most wonderful time of the year. As you read these words, I hope that you are envisioning me spinning in my wheelchair, wearing an oversized cardigan with leaves falling all…
Last weekend, my friends and I celebrated my 29th birthday with a brunch that was arguably too classy for us kids. The Champagne endlessly poured, the laughter continuously ensued, and my heart overflowed with…
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