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 have never been a morning person. My family, friends, co-workers, and pretty much anyone that has ever met me can tell you this is true. But on rare occasions, I’ll wake up quickly without wishing for just a few more moments of sleep. Last week was one such occasion.
It’s no secret that I love fashion. One glance into my generously filled closet confirms this. But as is the case with many things, SMA requires that I take a creative approach to style. Today, I thought I’d share some ways in which I navigate the challenges I have when…
August has always been one of my favorite months. Not only is it an ideal time for enjoying lots of fresh air, but it also happens to be SMA Awareness Month. The entirety of August is dedicated to informing the world about this rare disease…
I’ve collected a variety of scars throughout my life. Many people with SMA have comparable ones from similar surgeries. Even if you don’t have SMA, I’m guessing you also have at least one or two scars of your own. Each of my scars tells its own story of a difficult…
Because of the current state of the world, I felt safe in assuming I wouldn’t be attending any concerts this summer. I love concerts, but large, tightly packed crowds aren’t safe right now. However, I forgot to account for how creative people can be. On Independence Day, my family loaded…
For many years, Cure SMA, formerly known as Families of SMA, has organized an annual conference that brings together members of the SMA community from around the globe to learn and connect with each other. Given the current situation, most people were not surprised to…
The long-awaited days of summer have nearly arrived, and I am doing my best to take full advantage of the warmer weather. After so many months of sweaters that make it harder for me to move and sporadic snow flurries late into the year, it’s refreshing to throw open the…
We recently welcomed a new addition to our family. Our adorable puppy, Thor, is a mix of Australian shepherd (75%) and blue heeler (25%). Another name for this mix is Pure Cuteness. Thor seems to be adjusting well to his new home.
I often write about my personal perspective of life, but today I want to introduce an incredible person to whom I have the privilege of being a big sister. Among the many students finishing up their final year of studies is my no longer little brother,…
Like me, you’ve probably had far fewer face-to-face interactions since the start of the COVID-19 pandemic. It’s no longer safe to have company over, and we can’t meet friends or family members for lunch. I’ve been unable to gather with my friends at Turnstone for over a month. These types…
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