Lack of Black donors not helping a mother’s search
Levar Alonzo | 4/11/2019, 10:35 a.m.
Charlene Bullock remembers the first time she knew something was wrong with her seven-year-old son, Asaya. He was a baby and she was breastfeeding him. After a few feedings, she noticed that he was red. She figured that he must be allergic to something that she was passing to him. Bullock detoxed herself, but other unexplainable rashes and symptoms continued to plague her son.
After multiple doctor visits and even flying to an immune specialist in Seattle, Washington, Asaya was diagnosed with a rare blood disorder. The cure is a bone marrow transplant. But finding a donor is not easy for African-Americans like Asaya. According to the Icla da Silva Foundation, a recruitment center for donors, there just aren’t enough African-Americans on the registry.
According to data by the National Marrow Donor Program, of the 19 million donors registered, only about 850,000 are Black, which is just 23 percent, while whites have a 77 percent chance of finding a match. Finding a donor is further complicated by the mixed heritage of African-Americans.
“My son suffers from IPEX, which is an autoimmune disease; he has serious joint pain, develops rashes on the body, stomach issues, body aches, severe memory loss, and he hurts everywhere on his bad days,” Bullock said. “But when you look at him, he is all boy, loves sports, his video games and thinks he should be on the cover of GQ.”
Asaya has been waiting for five years to find a match.
Airam da Silva, 43, president of the Icla da Silva Foundation, which is named after his sister who died at 13 because she couldn’t find a donor, said that many African-Americans do not trust doctors and that turns some away from being donors.
“There are just a lot of misconceptions about the procedures, the possible costs. And that may lead to mistrust,” he said. “My foundation is all about outreach to African-American communities and any community of color because there is a match for everyone we just have to find them.”
He wants to breakdown the misconceptions that donating your marrow is how it’s depicted in pop-culture.
“It is one of the least invasive things you can do. It’s as simple as giving blood.”
Da Silva said that if you’re on the registry, you can give someone a chance at life.
“You can just simply sign up for the registry, swab your DNA and never be a match, but it’s about having yourself in the registry because of the what if factor,” he said. “I’ve personally been on the registry for 28 years, and I haven’t been matched to anyone, but I’m reassured that I could give someone a new lease on life.”
Asaya is currently waiting to find a donor from the Be the Match Registry, run by the National Marrow Donor program. He has lived past doctors’ assertions that he would not live to see the age of two. He is kept stable through high doses of medicine and regular doctor visits where his blood and glucose are tested.