Hope in the face of a rare genetic condition
After experiencing her daughter's devastating diagnosis, Melissa Bryce Gamble started the Global Foundation for Peroxisomal Disorders.
Tulsan Melissa Bryce Gamble is the founder of the locally based Global Foundation for Peroxisomal Disorders, which serves more than 400 families worldwide. Her daughter Ginny was born with Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder.
Melissa Bryce Gamble was thrilled when her daughter Ginny arrived in August 2008. Like most first-time mothers, she was overwhelmed with joy, as well as the fatigue and uncertainty that come with caring for a new life. For Bryce Gamble, however, there was something more — a nagging concern that things weren’t quite right with her baby.
“We were sitting outside at Charleston’s on Peoria, and an ambulance went by,” Bryce Gamble recalls. “Ginny was in her carrier, and she didn’t wake up at all. At that point, I knew something was wrong.”
By the time Ginny was 6 months old, she was already seeing multiple specialists in an effort to piece together what was going on with her, Bryce Gamble says.
Two years, multiple doctors and genetic testing resulted in a diagnosis: Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD), a rare, terminal condition that can result in everything from neurological and developmental issues to vision loss and bone disease. Other symptoms can include weak muscle tone, feeding problems, vision loss and seizures.
The diagnosis was devastating, but Bryce Gamble resolved to give Ginny the best life possible and to create a resource for other families dealing with PBD-ZSD.
In 2010 she started the Global Foundation for Peroxisomal Disorders (GFPD), a Tulsa-based nonprofit serving more than 400 families in 31 countries. To date, the GFPD has funded research at the National Institutes of Health, supported clinical trials for potential medications and organized family and scientific conferences.
Most importantly, the foundation has become a beacon of hope for other parents receiving this life-altering news.
“After we first got the diagnosis, I felt like I was drowning. I feel like those were maybe the worst three weeks of my life,” Bryce Gamble remembers. “Talking to somebody else who understands is life-changing. If I can do anything to help people not feel the way I felt, that’s what I need to be doing.”
Although Ginny died in 2015 at age 6, her memory shines brightly through the work of the GFPD. For more information, visit thegfpd.org.