I’m often told by friends that I’m a pretty chill, go-with-the-flow kind of guy. In my podcast group, I’m the peacekeeper, if and when a dispute ensues among my co-hosts. When I was on the editorial staff of North Carolina State’s student newspaper, I was the guy who…
Everyone is shaped by their circumstances, but SMA shapes you (literally) in a more extreme way. For most of my life, I did not understand the difference between my personal preferences and the person I was becoming out of necessity due to the implications of this disease. It has only…
Ava and Henry slept over at a friend’s house across the street. They had Grandma and Grandpa pick them up from school. They thought about Ella and asked how she is doing. They knew Ella would come home from the hospital with a boatload…
Since starting my full-time position here at SMA News Today, I’ve had the opportunity to take part in several multimedia projects. The podcast I do for this site is one of my favorite parts of my job, as I’m always fascinated to talk with other SMA individuals…
You may have noticed I was essentially AWOL throughout the month of December. I certainly wasn’t planning on disappearing, but you never can truly prepare for a two-day hospital stay right in the middle of finals. I still don’t know what I…
The healing process is long and arduous. Positioning is critical, medications are imperative, and positive energy is vital. Spine surgery requires bravery, determination, and stamina. Ella returned home from spine surgery six days after she was admitted to Lurie Children’s…
For the longest time, I thought New Year’s resolutions were one of the corniest, hokiest, most pointless traditions in our culture. Every year, people set unrealistic goals that they never follow through with, which only leaves everyone feeling disappointed and apathetic by the time March or April rolls…
Spinraza. This word elicits a different emotion for each person. Much like SMA itself, everyone’s experience with this medical treatment is different. For some, it has been life-changing in a good way; for others, in a not-so-good way due to suffering caused by the risks associated with it. Others are still…
Growing up, there was a big bay window in the house where I lived. It overlooked the front yard and gave a great view of the surrounding houses and outside world. The sunlight shone through it, making anyone who sat next to it feel warm and happy. To…
One of the consequences of having SMA is scoliosis. The increasing curvature of the spine contorts the body and compromises lung function. A thoracic-sacral-lumbar orthosis (TSLO) helps with supporting the body, but it doesn’t do anything to correct the curvature of the spine.
