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.“Are we wearing a cloak of disability?” my mom asked as a vehicle pulled out in front of our wheelchair van. At least, that’s what I thought she said. It turns out that she actually said “cloak of invisibility,” which made more sense. Although our big, black van is far…
Elephants have long been my favorite animal. I even have a collection of items depicting them. I’m captivated by the majestic giants whose eyes seem to convey vast wisdom and an array of relatable emotions like empathy, joy, humor, and curiosity. So, when I came across an episode of “…
I’ve been blessed to grow up in a city that’s mindful of accessibility and inclusion, which means there’s an abundance of accessible activities to participate in. Throughout my life, this has provided opportunities for me and my family to be involved in a variety of programs and services, including a…
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…
