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.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…
If you live with a visible disability or illness, then there’s a good chance you’ve experienced a stranger coming up to you and asking to pray for you. As someone who has lived for 21 years with spinal muscular atrophy (SMA) and uses a motorized wheelchair, I have had…
Since the age of 3, I’ve been attending Turnstone, a local organization that runs a center for children and adults with disabilities. Over the years, I’ve benefited from the many services and opportunities at Turnstone, including joining a cheer squad, attending teen socials, and participating in therapy and adult day…
Most people are familiar with the phrase “from where I stand.” The person speaking generally follows it up by sharing their personal perspective on whatever situation is at hand. It is not uncommon for two people to view the same situation in different lights. A variety of things can influence…
