BONE MARROW REGISTRY
Kellee Terrell, The Root | 4/1/2017, 12:18 p.m.
“You don’t want to see him on a good day, to be honest; it’s still pretty bad,” Charline Bullock said in an exclusive interview with The Root.
Her 5-year-old son, Asaya, suffers from immune dysregulation, polyendocrinopathy, enteropathy, X-linked (or IPEX) syndrome, a rare genetic blood disorder that causes multiple autoimmune disorders.
“He is a such sweetheart, but he gets so angry because he is sick. He suffers from serious memory loss, body aches, stomach issues, has serious joint pain, and it basically hurts everywhere,” she added.
“He loves to learn, too, but can’t even go to school for a full week,” Bullock continued. “As a mother, it’s devastating to watch your child suffer, and there is nothing that you can do to fix it.”
Despite the severity of his disorder, Asaya has lived longer than expected.
When he was diagnosed at 8 months old, Charline and her husband, Vincent Bullock, were told that he probably wouldn’t make it past the age of 2. And while treatment has helped keep him alive, doctors were clear from the beginning that a bone marrow transplant was the only cure. Soon after, Bullock got pregnant, hoping that because siblings have a 25-30 percent chance of matching another sibling, her baby girl would be the answer to her family’s prayers.
Sadly, that was not the case. After receiving his sister’s cord blood, Asaya rejected her cells despite being a 7-point match out of 10.
“I just remember my husband breaking down when they gave us the news that it didn’t work,” Charline recalled.
“As a mother, it’s devastating to watch your child suffer and there is nothing that you can do to fix it.” —Charline Bullock
Asaya is currently waiting to find a donor from the Be the Match Registry, run by the National Marrow Donor Program. But as it is for many other black people who are suffering from blood disorders and cancers such as sickle cell, leukemia and lymphoma, finding that perfect match isn’t easy.
There just aren’t enough potential donors of African descent on the registry.
Of the 12 million-plus donors registered, only 8 percent (800,000) are black, while 75 percent are white. Most important, given how much blood cell and marrow compatibility is based on similar DNA, race definitely matters in situations like Asaya’s.
“African Americans are more likely to match with other African Americans than with other races. But because we are one of the most diverse people genetically, finding a match is even more difficult for us,” said Addie Sanders, a senior community engagement representative for the National Marrow Donor Program.
“We have a 34 percent of not finding a donor, while white patients have a mere 3 percent chance. That’s a steep disparity. This is why it’s crucial for more of us, especially healthy people between the ages of 18 to 44, to sign up. Black lives are depending on it,” she stressed.
But Sanders, who has done outreach and recruitment for the past 12 years, understands that obstacles such as mistrust of the medical community and misinformation stand in the way of greater African-American participation.