My daughter Ella went to the hospital last week to receive her ninth dose of Spinraza (nusinersen). Before her appointment, she had concerns about the procedure. For several months, she has watched as her mother, Lindsay, battles a bone infection due to surgery. The…
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The A in SMA stands for “atrophy.” Atrophy means “to waste away.” My muscles are wasting away, and that can cause a lot of other problems. Scoliosis? Check. I had corrective surgery for this when I was 7. Osteoporosis? Yup. Healthy…
If someone had told me a few years ago that I would love going to physical therapy every week, I would have laughed. Let’s just say that the idea of letting other people stretch my arms and legs, contort my muscles into uncomfortable positions, and make me do…
I’m a strong, 30-something woman with SMA who feels beautiful, inside and out. One of the most meaningful compliments I’ve ever received was scrawled across the top of an essay written for a high school English literature class. In bold red ink, my graded paper exclaimed: “Finally! A dissenter…
I’ve always been a night owl. It’s a running joke in our family: My dad and I stay up until 11 p.m. or midnight, while my mom has a strict schedule comprising 8:30 p.m. bedtimes. She gets far too much enjoyment out of our morning grumpiness. If she’s…
Driving home from Boston one evening, I witnessed the sky paint a vibrant sunset as we cruised down the highway. Bright pinks and oranges swept across the view from my window as the radio blared through the speakers. A dear friend was in the driver’s seat, and as the sky…
When our children, Matthew and Katie, were in elementary school, I volunteered regularly in their classrooms. As a former educator, I knew that no sane teacher would turn down an extra set of experienced hands. I chaperoned field trips, helped organize classroom parties, and cleaned up after Project…
My wife, Lindsay, and I work as a team when it comes to taking care of Ella and the household. We have three children, ages 11, 10, and 8, as well as two young dogs and a bunny. Taking care of Ella requires physical strength. We…
In January, I self-published my debut collection of poetry titled “Witchcraft and Monsters.” In case you think that being an author is a “very chill job” (many believe it is not a job at all), I’m here to tell you that it is not. Yes, 95 percent…
They say it takes a village to raise a child. If that’s true, then it takes an army to care for someone who has SMA. Though most of us tend to have one or two primary caregivers, the reality is that we depend on countless people every day…
