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.For many years, I’ve been involved in a fantastic local organization called Turnstone that serves the disabled community with a variety of services. I’ve been blessed to benefit from Turnstone’s services since I was 3, both as a client in therapy and in other programs. In recent years, I have…
People look at me questioningly upon realizing that I live with my parents at the age of 22. Moving out is often considered a rite of passage. People expect me to do the same, even though many young adults enjoy living at home with their families. I don’t know what…
A few months ago, I shared a story about a family trip to a pumpkin patch and some of the challenges that I face during the colder times of the year. At the time, I was trying to soak up the last of the warm days…
Because of SMA, I have met people that I might never have crossed paths with otherwise. I’m blessed with the opportunity to connect with nurses, physicians, equipment providers, and other SMA families. I love all of these unique connections, but I especially cherish my relationship with my best friend, Kim.
Congratulations! You have completed another rotation around the sun. Now that the holiday celebrations are over and we have resumed our normal daily schedules, let us turn our attention toward a common practice at this time of year: New Year’s resolutions. Many people choose to start a new year by…
It’s not a secret that I’m not a big fan of winter weather. But that doesn’t mean I don’t like a few things about this time of year. Specifically, I love the winter holidays! Christmas has always been my favorite. I love watching my favorite Christmas…
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.
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