With Rare Disease Day coming up on Feb. 29, one question in particular has been circling the SMA community: “What makes you rare?” Anyone affected by a rare disease is entitled to their opinion. Likewise, everyone is uniquely…
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As the famous proverb goes, “Experience is the best teacher.” While that makes sense, I prefer to say, “Other people’s experiences are the best teachers.” Why go through the pain of learning from my own mistakes…
Back in 2014, I was a kid who simply wanted to graduate high school, take a year or two to relax, and go from there. This is not a decision I regret because I generally hated…
Being born with SMA put me at a severe physical disadvantage right off the bat. Most tasks requiring physical strength were off the table from day one, so I rarely had to deal with loss. For the…
I haven’t updated my Spinraza journey for a while because, well, nothing has happened. But we are getting down to the wire. Something is about to happen — or not happen — by the time this column…
I envy my younger self. Throughout childhood, I was content pretty much all the time. In the race of life, I was on equal ground with everyone else. Sure, I had physical limitations, but they didn’t…
Caregiving is an important job. After all, people like me would not exist without them. In a way, caregivers are my heroes. There are not many jobs that dictate the well-being, or even the…
“Refined by fire” is an idea I have talked a lot about. I identify with it so much that I decided to use it as my column title. I have given examples of my refinement, but…
As someone with SMA, I always have to be more cautious of germs than most people. A simple cold can escalate into something more serious, and even become life-threatening. I have always taken what…
I am crazy about football and basketball. I even have a sports blog called The Chairman. Everyone has passions in life, some of which help them escape the hardships of this world. For many people — especially…
When you are in a wheelchair, it is clear that something is awry. I look different. Some can see past it and treat me like anyone else, but for others, it is a barrier. As a result,…
Traveling is an important part of life. While many take this ability for granted, it is next to impossible for those like me. I can take advantage of all the other modes of transportation, but airplanes are…
Although we naturally avoid trials, those are what build character. Good times are wonderful, but they do comparatively little to prepare us for inevitable hardships. For me, the most terrifying experience of my life turned out to be the…
