A family in Waxahachie is searching for a cure for their son. They hope that their experience could help change someone else’s life. NBC 5’s Katy Blakey has more details.
A family from Waxahachie is reaching out to the community in hopes of finding a cure for their son and others with sickle cell disease.
Robert Webster loves to play the trumpet.
“I like the sounds it makes and the music. It kind of calms me down,” said Robert.
Yet lately, the 15-year-old has spent more days in the hospital than marching in his high school band.
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“I would cry a lot of nights when he was asleep because it just hurts my heart,” said his mother, Jacklyn.
Robert lives with sickle cell – a genetically inherited disease that can cause extreme pain.
Robert’s pain intensified in the last year, forcing lengthy stays at Children’s Medical Center Dallas, where he’s begun hydroxyurea therapy.
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“Sometimes, whenever I’m hurting, I like to hide it. I don’t want to make my parents feel sad,” Robert said.
But there’s hope. A bone marrow donation could provide a cure.
“In the world of hematology and oncology, this is life-saving,” said pediatric hematologist at Children's Health and associate professor at UT Southwestern Dr. Alecia Nero.
“pediatric hematologist at Children’s Health and associate professor at UT Southwestern”?
The odds of finding a match are dependent on a patient’s ethnicity.
According to the National Marrow Donor Program, Black patients are less likely to find a matching donor.
Black patients find matching donors 29% of the time compared to 79% for white patients, according to NMDP.
“We do not have enough diversity in the pool of donors,” Nero said.
“It’s not just my son; there’s lots of other people out there who need a donor as well, and there’s nobody on the registry to match,” said Jacklyn.
His family and care team hope talking about bone marrow donation could encourage someone to register and lead to a cure for Robert or another child.
To join the donor registry, visit bethematch.org.
