Through the generosity of her peers and staff members at Rocky Point High School, 10th-grader Kelly McCauley has raised more than $250 for the Dystrophic Epidermolysis Bullosa Research Association of America.
Epidermolysis Bullosa or EB is a rare genetic connective
tissue disorder that leaves individuals with very fragile skin that can blister
or tear from minor friction or trauma. In honor of National Rare Diseases Day,
Kelly organized a school fundraiser for debra, a nonprofit organization
dedicated to funding research and providing support services and programs for
those with EB.
With two family members affected by EB, the cause is a personal and important one to Kelly.
“I was hoping to create more of an awareness for this cause,” Kelly said. “Too often, we don’t realize how lucky we are or take our health for granted.”
For her effort, she
coordinated a Wear Red Day at the school and sold silicone bracelets. Each
individual who donated to the cause had their name written on a red butterfly,
as individuals with this disease are often called butterfly children, since
their skin is as fragile as butterflies’ wings. The inscribed butterflies were
displayed on a poster in the main hallway.
Photo provided by the Rocky Point School District