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.A few months ago, my brother came to my room to repeat what our mom had just instructed him to tell me. With a slightly sarcastic yet serious tone, he informed me that he could no longer refer to me as a wheelchair user, because one of his college textbooks…
Life after high school leaves us with plenty of paths to choose from in our pursuit of various goals. College and careers are a few of the many options to be considered. After exploring volunteer work and other activities at the local disability center, I began searching for…
Disabled people and their loved ones are some of the most creative people on the planet, and I don’t just mean artistically. We have to find creative solutions to everyday problems we encounter as a result of our disabilities. Our world isn’t always accessible, and sometimes sees…
My family and I have just returned home from a fun-filled, relaxing vacation in Orlando, Florida. We haven’t taken a vacation in over two years, and it was long overdue. Vacations offer opportunities to explore a different part of the world and take a break from normal routines. But sometimes…
About a decade ago, I woke to the sight of dozens of butterflies bathed in gentle light above my head. I wasn’t expecting that. When I lost consciousness, my mom and I had just arrived at the hospital in an ambulance after being rescued from our home by…
Last week, my mom, brother, and I decided to grab coffee on the way home from picking up groceries. The Starbucks closest to our house has one of the only drive-thrus that can accommodate the towering height of my high-top wheelchair van. Our order was taking longer…
Ed. note: This column was written in collaboration with fellow columnist Alyssa Silva for SMA Awareness Month. Read about her experiences with multigenerational living and how the two stories intersect at “Life, One Cup at a Time.” “But don’t you want to live on your own someday?” That’s a…
After an extra year of waiting, the Tokyo Olympics are finally underway! I’m generally not much of a sports fan, but I always look forward to the Olympics. Even for those of us who don’t usually watch sports, at least one event will spark our interest. I…
Society often defines successful people as those who have achieved several traditional milestones. Those milestones tend to include obtaining a college degree, becoming financially independent, buying a home, getting married, and raising children. If you’ve achieved anything on that list, congratulations! Please know that these are all praiseworthy accomplishments. My…
For many years, the annual Cure SMA Conference has been bringing the SMA community together to learn and to connect. Throughout its history, the conference has traveled to a variety of locations across the U.S., hosted countless seminars and socials, navigated new virtual platforms, and provided…
