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.My wheelchair van pulled up outside of a vaccination clinic downtown where I would receive my first dose of Moderna’s COVID-19 vaccine. This was one of my biggest outings in over a year. Like many in the SMA community, I made the choice to limit most of my excursions to…
Like any proud Irish girl, I love St. Patrick’s Day. (According to Ancestry, I’m exactly 12% Irish.) I always wear customary green to mark the occasion, and I enjoy partaking in festive events. But what I love most about the day is…
As Rare Disease Day approaches on Feb. 28, many in the disability community are seizing the opportunity to share about their diseases and the many aspects of being rare. Having an entire day dedicated to this purpose is wonderful, but let’s not limit these discussions to…
It’s been 10 years since my last hospitalization. I’ve waited a long time to be able to say that, because I’ve never been able to say it before. This is a feat of epic proportions for someone with SMA. It’s even crazier when I reflect on the prognosis from my…
Nearly a month into 2021, I think it’s safe to say we’re all glad to have left 2020 behind us. It certainly wasn’t an easy year. Its hardships likely will go down in the history books. Around the globe, we saw a devastating pandemic, raging wildfires, and a…
Last summer, I met a new friend, Amber Bosselman, at the Virtual Cure SMA Conference. Amber is a certified life coach with a bachelor’s degree in psychology. She uses her knowledge to…
In recent years, Disney has started a new trend of turning its classic animated movies into live-action remakes. In 2019, it released a reimagined “Aladdin.” Much of the story stays true to the original film from 1992, and any differences that do occur only serve to make the movie stand…
Thanksgiving is almost upon us. Meals are being planned, and turkeys are being purchased. The delicious smells and flavors of pumpkin and cinnamon will be consumed in many homes. And, my favorite part, thankfulness abounds: Family, good health, the food on the table, and financial stability are commonly counted among…
I’ve been told many times by many people that I should be a counselor. It’s not unusual for my friends, family members, and co-workers to turn to me for wise advice, calm reassurances, or simply a listening ear. I don’t always know the right advice to give, but I try…
Children typically grow up with many opportunities to participate in a variety of activities. After exploring options, they choose the ones they enjoy most. They might choose sports, or they could opt to participate in art, music, or video gaming. If passionate, they might stretch these interests into adulthood. It’s…
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