“Sherry has big dreams!” my neurologist once told my mom while explaining the difficult decisions my medical team had to make, adding that the team was doing its best. At the time, I had wanted to become a video game writer, hoping to follow in the footsteps of the creators…
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For many years, there was a quote hanging in our local zoo, but I no longer remember if it was by Edmund Burke, who (rightly or wrongly) is credited as saying, “Nobody made a greater mistake than he who did nothing because he could do only a little,”…
Our journey was rough from the start. During a well child visit, I shared concerns that something was going on with my son, Luke (call it mom instincts). We were referred to a neurologist and then a brain and spine specialist where Luke had three blood tests done, one…
It’s incredible how seemingly small changes can lead to something that turns out to be much bigger. Let’s explore this idea through my experience with SMA. In February, I moved into a new house, where we converted the garage into my bedroom, bathroom, kitchen, and medical supply room.
New treatments for spinal muscular atrophy (SMA) are helping many people live longer, fuller lives, changing what it means to grow up — and grow older — with the condition. SMA is now being managed across all stages of life, shifting care from palliative support toward long-term health and…
First in a series. In this season of Thanksgiving, it is easy for me to declare my gratitude for my family and friends, the generous and caring community that surrounds me and enriches my life. I write about these people and relationships often. They are the primary theme of my…
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