Meet Stella
Age at the time of the Marathon: 6
Diagnosis: Spinal Muscular Atrophy Type 2
Hometown: Sunbury, OH
When Stella’s parents noticed she couldn’t bear weight on her legs, they mentioned it to her pediatrician who suspected she had decreased muscle tone, clinically referred to as hypotonia, and started her on physical therapy. However, even with weekly physical therapy appointments she showed no progress. Continuing to search for answers for their daughter, Stella’s parents, Shayla and Cole, turned to a pediatric neurologist who suggested testing for Spinal Muscular Atrophy (SMA), a rare neuromuscular disorder that cause certain muscles to become weak and atrophy.
Results confirmed Stella had SMA type 2, a subtype of SMA that begins to appear between six months and 18 months of life. Stella was immediately put in contact with Anne Connolly, MD, Division Chief of Neurology at Nationwide Children’s Hospital, quickly set her up to receive a newly FDA-approved gene therapy, called Zolgensma.
The pre-clinical work leading to the FDA approval of Zolgensma, was conducted by researchers from the Abigail Wexner Research Institute at Nationwide Children’s.
Since receiving Zolgensma, Stella’s SMA has not progressed, and she has been slowly gaining strength. In fact, her doctors have been increasingly impressed with how strong she is getting.
“We were given a new look on life and Stella a second chance thanks to Nationwide Children’s and the Neuromuscular department,” Shayla shares. “We’re grateful for modern medicine and the fantastic doctors that have provided Stella care and assisted in the fight for her treatment.”
Stella loves arts and crafts, music, playing with Barbies and baby dolls, and is quite the comedian. Despite countless doctor’s visits, blood draws and three fractures, Stella faces each new obstacle with a positive attitude.