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.Have you ever solved the world’s problems? I have. Well, sort of. That’s what we say we’re doing when Mom and I get together for coffee with our friend Connie Chandler, a fellow SMA News Today columnist. Our deep conversations often feel like they provide answers…
Today is my 28th birthday! As anyone in the SMA community knows, age is not a privilege guaranteed to those of us living with the disease, so every birthday — and every individual day — is worthy of celebration. But 28 years of life is not something I…
I’ve long dreamed of visiting the Georgia Aquarium in Atlanta to see their famed whale sharks. Something about the gigantic yet peaceful sea creatures tugs at my soul in a way that made me crave seeing them up close. Eventually, that dream became a reality as well as…
It surprised me to open my email one night to find a message from my colleague Michael Morale. Well, it wasn’t really from Michael. It was from his Otter, a virtual assistant that had attended a company meeting for him that day and sent notes to everyone with…
While you might recognize Val Kilmer from iconic films like “Top Gun” or “Batman Forever,” the first of his movies I saw was probably one of my mom’s favorites, “The Saint.” It’s the story of an orphaned con artist who, stripped of his own identity in…
One of my favorite things about springtime is the return of the local bird life, especially the songbirds. While certain species stay through the winter, the warmer weather brings forth a flurry of feathers as both year-round residents and seasonal visitors bustle with new activity. I can’t claim…
When I backed off my van’s wheelchair lift, I didn’t find what I expected to. We had just parked at a restaurant we’d never been to in a different town, and I knew there would be a ramp onto the sidewalk to my left. I just didn’t think it would…
I didn’t expect to find myself participating in a Valentine’s Day card exchange as an adult. I thought such festivities were (sadly) reserved for kids. But then a friend shared a Facebook post last year inviting people to join a card exchange for anyone with SMA and their…
It takes a rather large team of specialists and various medical professionals to help manage my care alongside me and my mom, who’s my primary caregiver. That means I have to attend lots of doctor appointments. I’d like to tell you how many of those appointments and medical meetings I…
Have you ever dreamed of being a princess (or a prince)? I think most of us have, adults included. I’ve always been a Disney fan, and it has no shortage of princesses to choose from. Each one is unique, so it’s usually easy to find at least one you can…
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