Halsey is a young woman living with SMA Type I. She received this diagnosis at the age of 15 months after her parents sought multiple doctors’ opinions and genetic testing — a process that has since been made much easier with today’s technology and understanding of the disease. Halsey is an avid reader and enjoys art and crock pot cooking. She also enjoys serving as a volunteer for a disability center in her home state of Indiana. She is now pursuing her writing dream with the hope of offering glimpses into everyday life with SMA and challenging readers to look for the positive in every situation.The passage of time is a strange thing. A quarter of a century seems like such a long time to have been alive, yet at the same time, it’s like the blink of an eye. Somehow, as of Sept. 26 (the day I’m writing this), that’s exactly how long I’ve…
As a young teenager, I went with my mom to a workshop at a Cure SMA conference about living with SMA as a woman. A room full of young ladies and their mothers spent the afternoon asking questions of the panelists and seeking to gain wisdom and…
When I say “inaccessibility,” what’s the first thing you think of? You might envision something like a set of stairs, a broken elevator, or a car that’s been carelessly parked in front of a ramp. These do create accessibility barriers for people with mobility challenges such as spinal…
If you’re a regular reader of my column, you might have noticed that it usually ends with a positive spin. Once, I even wrote about being thankful for things that don’t seem very good. I won’t deny that life with SMA has negative aspects, but whenever possible,…
With that headline, I’d expect this column to belong to my friend and SMA News Today colleague Kevin Schaefer. After all, he’s not shy about sharing less than pleasant aspects of living with SMA, including detailed stories about his trips to the bathroom. But believe…
It’s not uncommon to plan for the future. Most of us have at least an idea of what we’d like our lives to look like five, 10, or 20 years from now. Some people even lay out detailed plans for how they intend to accomplish their goals regarding careers, marriage…
On a hot summer day, you will usually find yourself needing a cool drink to quench your thirst sooner or later. You might choose a cold glass of water, lemonade, soda, or iced tea. My go-to is always some type of fruit smoothie, though sometimes I’ll opt for a milkshake,…
Back in November, the latest e-newsletter from We Carry Kevan (WCK) landed in my inbox, and this one included an intriguing request. They were looking for volunteers to serve as ambassadors who would promote the organization’s mission of redefining accessibility in their communities. One area where ambassadors were…
I’m fairly frequently asked what the hardest part of living with SMA is, but no matter how many times I hear the question, I seldom know how to answer it. Each day brings its own unique hardships, so how I respond changes based on the struggles of that particular…
My mom and I enjoy treating ourselves to a relaxing afternoon of mother-daughter bonding at the nail salon from time to time. We don’t have one specific salon that we always go to. While there are some that we like better than others, we often pick one that’s in an…
