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.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…
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