Hometown: Morgantown, WV
Age on Race Day: 11
Diagnosis: SMA Type II
At 9 months old, Winnie’s parents noticed that she was missing certain developmental milestones, such as pulling to stand and bearing weight on her legs. After months of testing, Winnie and her family finally got an answer. She was diagnosed with Spinal Muscular Atrophy (SMA) type II.
Winnie's parents knew they needed the best care for their daughter, and research kept pointing them to Nationwide Children's Hospital. Many research trials and breakthroughs have come from the labs of various researchers at Nationwide Children's including researchers at the Jerry R. Mendell Center for Gene Therapy who pioneered a medication to treat SMA type I in children under 2. As soon as Winnie's parents entered the hospital, it was clear that they had made the right choice.
“Immediately, the team at Nationwide Children's welcomed us with open arms,” says Ann, Winnie's mother.
Nine days prior to Winnie's first appointment, the FDA approved the first-ever treatment for SMA type II. With support from her medical team, Winnie became one of the first patients to receive the drug at Nationwide Children's.
Winnie was granted access to two additional therapies. These include an oral treatment for SMA which helps her body produce more of a vital protein called survival motor neuron and a weekly injection intended to create more muscle mass. Winnie is also in physical therapy.
Today, Winnie is a spunky 10-year-old who enjoys reading, crafting, playing with her brothers, and traveling. She is currently working on her first children's book, 'Winnie's Big Day,' about her experience with surgery. She hopes that it will help other children feel less scared about their own surgeries.
