Most days, Asaya Bullock’s life is just like every other kid’s, with no signs of a struggle. The 7-year-old loves math and dreams of becoming a professional basketball player or a Navy pilot when he grows up.
But Asaya has a rare immune system disease called IPEX, or immune dysregulation, polyendocrinopathy, enteropathy, X-linked syndrome. Among his long list of symptoms: rashes, joint pain and migraine headaches. Doctors say the only cure is a bone marrow transplant.
Asaya’s parents, Vincent and Charlene, have been searching for a donor for their son for five years with no luck. Their daughter Anaya turned out not to be a genetic match.
“You don't ever sleep because you know at any point in time your baby could lie down next to you and he doesn't wake up,” Charlene Bullock told NBC News.
Part of the challenge in finding a match for Asaya is a shortage of black donors. The nation’s largest bone marrow registry, Be The Match, has nearly 10 million potential donors, but fewer than 1 million are African-American. A white child has a 77 percent chance of finding a match, while a black child has a 23 percent chance. Experts say the shortage could be due to a lack of awareness that more donors are needed in minority communities.
The Bullock family is not giving up on their search, anchored by their son’s strength. They’re urgently trying to raise awareness for more donors to help Asaya live a long and healthy life.
“He doesn’t give up. I don’t give up. We don’t give up,” his father said.