Before I knew what illness anxiety was, I made excuses for my ever-present fear of death by the common cold. “I was supposed to die at 9 years of age,” I tell people, watching their faces screw up with realization. “I shouldn’t be…
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If you live with a visible disability or illness, then there’s a good chance you’ve experienced a stranger coming up to you and asking to pray for you. As someone who has lived for 21 years with spinal muscular atrophy (SMA) and uses a motorized wheelchair, I have had…
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…
Our house is filled with music and song. Ella turned 9 on Monday. In light of her joining the Young Naperville Singers, we decided to get her a karaoke machine. She was delighted at the prospect of hearing her voice through the speakers. We downloaded an app to go…
When I was diagnosed with spinal muscular atrophy (SMA) at 11 months old, there was no cure or treatment. Vitamins, physical therapy, and respiratory exercises were used in the hope of slowing disease progression and maintaining physical abilities rather than improve health. Five…
I can’t sit still during a great classic rock tune. Despite my SMA, any muscle fibers that have remained awake will begin to shimmy and shake, and even the muscles that have become withered wallflowers will try to bust a move on the dance floor. When I heard the “…
A few weeks ago, when I was preparing for my eighth Spinraza injection, I had to indulge in an activity that many of us with SMA dread. We manage everything from pneumonia to travel fiascoes, but having to get blood drawn is…
When I first met Elena, my patient care assistant’s daughter, she was almost 2, with chubby cheeks and golden ringlets of hair. She was shy — painfully so. It took her months to warm up to me, and even then she…
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…
The past two and a half years have seen a whirlwind of celebration in the world of SMA. What I consider one of the best gifts possible for families arrived on Dec. 23, 2016 when, for the first time ever, the FDA gave its approval to an SMA…
