Local Mother Helps Children, Families Fight Krabbe Disease
Posted March 30, 2003
DURHAM, N.C. — A mother in Durham who lost her son to a rare disease is on a mission to help other children have a chance at life.
Kelly Brown's work in the Triangle is helping families all around the world.
She lost her son, David, when he was 15 months old to a genetic disorder called Krabbe disease.
The average lifespan for Krabbe patients is 13 months, doctors told Brown.
David was diagnosed at 6 months old.
"I knew it was a terminal illness, but didn't know much about it," said Brown.
Children with Krabbe disease do not have an enzyme needed for brain development.
Since her son's death, Brown has started working with
, a foundation started by NFL quarterback Jim Kelly, whose son, Hunter, also has Krabbe disease.
There is not a cure for Krabbe disease, but stem-cell transplants can slow the disease.
Duke University is one of a few places offering transplants for children with Krabbe disease.
Brown said her role is to help families who bring their children to Duke.
"Whether that be visiting, talking or going grocery shopping for them," she said. "Whatever."
Anne Rugari and her 3-year-old daughter, Gina, said they travel from Kentucky to Duke every year for checkups.
Rugari's oldest son, Nick, died from Krabbe disease.
Gina also has this disease, but received a stem-cell transplant when she was 4 weeks old.
So far, doctors have not found any sign of the disease.
The earlier children are diagnosed and have a transplant, they better they respond, said doctors.
"She's gaining milestones every day, going to preschool," Rugari said. "She's surpassed my expectations."
She said she feels Nick's spirit in Gina.
"I just know that he kind of watches over her like a guardian angel," she said.
Although her son is gone, Brown said she finds comfort in seeing children like Gina doing so well.
"It's my calling," she said. "God put me here near Duke for a reason."