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.In a tourist shop on the coast of Lake Michigan a few summers ago, my mom spotted a sticker depicting the town’s lighthouse in the style of my favorite painting, Vincent Van Gogh’s “The Starry Night.” She suggested that it’d look cool on my power wheelchair, and…
There’s a trend taking root in the SMA and disability communities that has me worried. It’s the idea that to gain independence as disabled adults, we must separate ourselves from our support networks and find ways to manage our lives and healthcare on our own. Society tells…
If you haven’t met this celebrity of the SMA community, I’d like to introduce you to my friend Angela Wrigglesworth-Titcombe. She’s 46 years old, has SMA, and is a fifth-grade teacher. She and her husband of six years, Justin, love to travel and enjoy…
Mom and I always bring another person or two to my specialist appointments at the SMA clinic. It’s out of state — about three hours from our home — so it’s easier when we have extra helpers throughout the long journey. It’s also nice to have company.
One of my favorite discoveries during my family’s recent vacation on St. Simons Island was the Georgia Sea Turtle Center on neighboring Jekyll Island. The center rehabilitates sea turtles and local wildlife in need of medical care so they can be released back into their natural…
Maybe you’ve noticed from my past columns that my family enjoys traveling. We’ve been blessed to visit a variety of destinations together, but we’re repeatedly drawn to locations with scenic coastlines and warm climates. My mom books all of our family trips. With a lifetime of…
(Note: This column contains spoilers for the movie “Five Feet Apart.”) The 2019 movie “Five Feet Apart” focuses on a young couple, Stella and Will, who fall in love while receiving treatment for cystic fibrosis (CF). Their love is dangerous, though, because coming within 6 feet…
For kids, February tends to entail a Valentine’s Day party for every activity, club, or team they’re a part of. Our mom used to take my brother and me to plenty of these parties when we were little, as we were actively involved in church, disability organizations, and our home-schooling…
It seems there are hacks for everything now — little tips and tricks designed to help us get the most out of life while saving time, energy, or money. The internet and media are full of hacks for interior design, organization, cooking, budgeting, traveling, fashion, mindfulness, and just about anything…
When rumors began circulating years ago that a certain blue police box time machine might be getting an accessible makeover, my interest was more than piqued. Would a ramp truly be added to the TARDIS when the British sci-fi show “Doctor Who” returned to the air late…
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