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.My parents and I recently attended a National Philanthropy Day breakfast with a group of staff from Turnstone, our local center for people with disabilities and their families. I’ve been a client at Turnstone since I was 3 years old, and I have started…
I’m staying indoors more and more on Halloween. The cold is taking an increasingly large toll on my body. I roll through the neighborhood with the younger members of my family when the weather is unseasonably warm, but that doesn’t often happen in northern Indiana. Instead, I’ve started passing…
Summer has drawn to a close, and Mother Nature has begun painting the trees in beautiful fall colors. As fall arrives, the temperatures also begin to change. Unfortunately, cooler weather tends to be hard on my body, and it takes a while for me to adjust. As temperatures…
In January 2011, I had a period of illness that sparked an emergency tracheostomy surgery. It also marked the time that home nursing care was unexpectedly thrust into my family’s lives. In the years since then, my nurses have become an important part of our household.
As my 22nd birthday rapidly approaches, I almost can’t comprehend it. The thought of my birthday has seemed surreal for the past several days. To most people, turning 22 probably isn’t that big of a deal. You don’t get to do anything new. Your friends start to tease you about…
Have you ever seen a person with a wheelchair rolling toward you and wondered how you should react? You’re likely not the only one. Here are a few pointers for the next time you find yourself in this situation: Make eye contact You don’t need to stare, but…
Being sick tends to take a lot out of people with SMA, and the healing process is often slow. A few days after returning from a family vacation this year, I started to feel ill. My heart rate was quickly rising and I had a slight…
For our summer vacation, my family and I decided to take a trip to Ontario, Canada, to see Niagara Falls. Most of us had never been, and I had never traveled out of the United States. We walked by the falls, took a trip to the top of the…
Like many people, I love to cook. One of my favorite activities at Turnstone’s Adult Day Services program is the monthly cooking class, where I have learned to make all sorts of tasty dishes ranging from homemade peanut butter cups to grilled honey mustard chicken. I’ve also spent many…
The U.S. Food and Drug Administration (FDA) recently announced the approval of Zolgensma (onasemnogene abeparvovec-xioi), the first-ever gene therapy to treat SMA. This amazing news has thrilled the SMA community with its possibilities! Zolgensma opens new doors for increased strength, resistance to illness, and longer lifespans. As…
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