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.I’m fairly frequently asked what the hardest part of living with SMA is, but no matter how many times I hear the question, I seldom know how to answer it. Each day brings its own unique hardships, so how I respond changes based on the struggles of that particular…
My mom and I enjoy treating ourselves to a relaxing afternoon of mother-daughter bonding at the nail salon from time to time. We don’t have one specific salon that we always go to. While there are some that we like better than others, we often pick one that’s in an…
Somehow, it’s already been three years since I began sharing my story with you in this column. It’s been a beautiful, heartfelt adventure that I’ve thoroughly enjoyed. But I have to admit that when I invited you to pull up a chair back in 2019, I didn’t really…
After moving into our new home a few months ago, members of our family made a trip to the Indiana Bureau of Motor Vehicles to update our IDs with our new address. I had another mission to accomplish while there. I wanted to register as an…
It’s been about two years since I got a message from a friend saying that she would miss seeing me at Turnstone, the local disability center. Earlier that day, an announcement had been made that the building would be closing for an undetermined amount of time due to the COVID-19…
Whenever my family and I meet new SMA specialists, they’re usually rather perplexed by me. They watch in amazement and excitement as my abilities defy the expected progression for an adult with SMA type 1 — someone whose rare genetic coding says they probably shouldn’t be alive, let alone…
I’ve been depending on my tracheostomy tube to supply me with sufficient amounts of oxygen for 11 years. At this point, its presence is familiar to me in much the same way as a favorite piece of jewelry that’s worn every day. I don’t always think about…
Last year, my grandma excitedly told me about the book her high school students had been assigned for summer reading. After reading only a few chapters of “Unwind” by Neal Shusterman, she was clearly hooked and insisted I read it. I didn’t need much convincing — futuristic young adult…
Many years ago, I was sitting in Disney World’s Magic Kingdom waiting for the start of a parade. A few feet away, a boy with a disability also was waiting. He was resting in a flat stroller that allowed him to lie down, and a BiPap machine helped him…
Christmas is my favorite holiday for many reasons, and gift-giving is just one. I genuinely enjoy hunting for the perfect gift for everyone on my list. It’s one of the ways I express love, and watching family and friends open hand-selected surprises brings me as much joy as opening my…
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