- Spinal Muscular Atrophy SMA
Age at Treatment: 11 months
Age Today: 4 Years
In May 2019, Stella’s parents, Shayla and Cole, received news that no parent wants to hear. Stella was diagnosed with SMA (Spinal Muscular Atrophy) at only 11 months old. SMA is a genetic disease which affects the part of the nervous system that controls voluntary muscle movement.
Shayla and Cole first noticed something was off when Stella couldn’t bear weight through her legs, even when they were holding her in their laps. At Stella’s six-month checkup, Shayla told the doctor that she thought there was an underlying issue, but there were no signs for further examination. Flash forward to Stella’s nine-month checkup, and Stella was still unable to bear weight and now had terrible digestion issues. A different doctor thought she had low muscle tone (hypotonia) and started her on physical therapy. However, even with weekly physical therapy, she showed no progress, and Shayla and Cole turned to a pediatric neurologist. The neurologist suggested testing for SMA and, unfortunately, the results confirmed the worst.
Shortly after Stella’s diagnosis, Shayla and Cole connected with Dr. Anne Connolly, chief of the Division of Neurology at Nationwide Children’s Hospital. They were told treatment was urgent and that every day counted because Stella would continue to lose motor neurons and be robbed of her physical strength. Dr. Connolly started Stella on Zolgensma, a new gene therapy approved by the FDA just days before Stella’s diagnosis. The preclinical work leading to the FDA approval of Zolgensma was done by researchers from the Abigail Wexner Research Institute at Nationwide Children’s and The Ohio State University College of Medicine.
Since starting treatment, Stella’s SMA has not progressed, and she has been slowly gaining strength. In fact, her doctors have been impressed with how strong she is getting. Over the past two years, Shayla and Cole have gone from hearing “we don’t expect her to stand” to hearing phrases like “as she continues learning to walk…”. There are still many unknowns surrounding Stella’s future mobility, but today she is happy and healthy and at the end of the day, that’s all that matters.
Despite countless doctor visits, blood draws and three fractures, Stella still has a smile on her face. She is driven, determined and faces each new obstacle with the most beautiful and positive attitude. Stella loves arts and crafts, music and playing with dolls. She is also quite the little comedian. Her personality is contagious, and her resilience admirable.
“We were given a new look on life and Stella a second chance thanks to Nationwide Children’s and the Neuromuscular department,” Stella’s mother shares. “We’re grateful for modern medicine and the fantastic doctors who have provided Stella care and assisted in the fight for her treatment.”
This holiday season, when you donate to Nationwide Children’s, you will light up the hospital lawn with glowing butterflies for patients to see and in doing so, light up their life. When a gift is made, butterflies will illuminate across the front lawn of the main hospital. Won’t you help kids like Stella with their second chance this holiday season?