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.Every disabled person, including those with SMA, has likely received the well-intentioned compliment of being told they’re inspirational, but it’s not a label that everyone is comfortable wearing. This fact leads me to wonder why. Who should we take inspiration from, and how should we communicate it? We all…
It can be fun to let our imaginations run wild with the idea of choosing a superpower. The possibilities are endless, practically begging to be explored by creative minds. Superpowers might be things of fiction, but I can’t help wondering how my real life might influence my answer. Could there…
People with SMA often have very little privacy. Because we lack the strength to independently complete most activities of daily living, we rely on others to accomplish those tasks with or for us. Even intimate activities that warrant total privacy, such as bathing, dressing, and toileting, require the…
In the late summer of 2021, we took a family vacation to Orlando, Florida. Our resort had an accessible outdoor pool, so we couldn’t resist spending a sunny morning relaxing in the glittering water. As I sat in my mom’s lap, my smaller, floppy body held upright by…
My feeding tube became a part of my life amid a series of illnesses that required hospitalization when I was 13. I’d lost a dangerous amount of weight as my body burned through every available resource in an attempt to fight off infections. I was far…
As humans, we so often want everything to fit into tidy little boxes with labels that clearly identify the contents. But while we may be able to draw a few parallels, life isn’t exactly like organizing a storage closet. It’s more complicated than that. That knowledge doesn’t always stop us…
It’s been nearly two weeks since most of the U.S. “sprang forward” into daylight saving time (DST), and no matter how many times we go through the biannual time changes, it always seems to take this long for everyone to fully adjust. Some people may even still need to update…
I still remember exactly what I was doing when news broke that Evrysdi (risdiplam) had been approved by the U.S. Food and Drug Administration (FDA) in August 2020. Up until that point, it had been a pretty ordinary day. It took only a moment to become so…
It’s hard to say exactly what impact rare disease awareness has had on our world. What has it taught us? Those of us with SMA and other rare diseases are keenly aware of the benefits that years of advocacy, research, fundraising, and education have brought to our disability communities…
Who would’ve thought that something as mundane as straws could become a hot topic? Yet in recent years, they’ve been featured in countless news stories, sparked debate, and been targeted by well-meaning environmental movements. I like to think I know a few things about straws. I’ve been utilizing them daily…
Get regular updates to your inbox.
