“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.
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“I just remember my husband breaking down when they gave us the news that it didn’t work,” Charline recalled.
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.
“For some black folks, it’s not possible to donate—they are literally trying to make it themselves on a day-to-day basis,” Sanders said. “Also, for reasons that are completely justifiable, there are black people who just don’t trust the registry and have all of these misconceptions about what getting on it entails.”
For example, Sanders said, people often believe that just enrolling calls for an immediate invasive procedure that requires anesthesia.
“At outreach events, people have told me they don’t want to sign up because they think we will be extracting bone marrow from their hip that day. That couldn’t be any further from the truth,” she said reassuringly. “The first step only requires swabbing your mouth, and you don’t even need to attend a community event to join the registry. We can send you a free kit; all you have to do is mail it back in.”
In addition, Sanders noted that potential donors worry about the financial burden of donating and wonder if having health insurance is a requirement.
“The National Marrow Donor Program pays for the procedure, any blood work or testing, and any other medical care associated with the transplant before or after, regardless of whether you have health care. Even if you have to travel to another state and stay in a hotel, we pay for all of that, too.”
Sanders also believes that pop culture plays a role in people’s fear and reluctance.
“[Over the years,] television shows such as Grey’s Anatomy and House and films like Seven Pounds come up with these situations that are totally unrealistic when it comes to bone marrow donation. It’s really irresponsible, because donating is nowhere near that dramatic, yet these myths stop people from wanting to learn more about the process,” she explains.
Sanders has a point: There is a cultural belief that providing this type of donation must involve an incredibly intense surgery, when, in reality, around 80 percent of actual donations are nonsurgical and are similar to giving blood.
Meanwhile, having a doctor withdraw marrow from one’s pelvic region accounts for roughly 20 percent of how marrow is donated. With that technique, it’s important to note that it’s done with anesthesia, meaning that no pain is felt during the procedure. Granted, there can be side effects such as back pain, fatigue, insomnia and dizziness afterward, but on average, a donor is back to normal in three weeks.
Journalist Abby West, who also sits on the board of the National Marrow Donor Program, can attest to what it’s like to endure the donation process. Seventeen years after she joined the registry at a local outreach event in Connecticut, she was told in 2014 that she finally matched a patient in need.
“I actually forgot that I was even on the registry,” the mother of two teenagers admitted. But once she got the email, she instantly knew that she wanted to do it.
“Yes, the process was uncomfortable, and you have to take medication, but it’s one of those things that has a finite end,” West said. “I kept telling myself that my discomfort is going to save someone’s life.”
West, who donated nonsurgically, said that even if she had needed to go through the surgery because that was best for the recipient, she would have done that with no reservation.
“It’s about taking responsibility for someone’s life that is literally on the line,” she said. “A lot of people believe it’s so easy for someone to find a match in their family, when, in fact, 70 percent never do. So they are literally depending on strangers to step up. This is why we have to get on the registry.”
But West is clear: Merely putting yourself on the list isn’t enough. “When you get that call, you need to be committed and ready to follow through,” she said.
Sanders echoes West’s sentiments: “Unfortunately, too many times, people tell us ‘Oh, I didn’t really mean it.’ You have no idea how devastating it is for a family to be told a match was found and it never materializes.”
As for Charline Bullock, she hopes that anyone who is on the fence about joining the registry or is just learning about it thinks not just of her precious Asaya but also of the countless other black lives he or she can save.
“It doesn’t take much; it really doesn’t,” she explained. “Families like mine just need our community to understand the importance of looking out and showing up for one another.”
Learn more about Be the Match and how to be added to the registry.
Kellee Terrell is an award-winning Chicago-based freelance writer and
filmmaker who writes about race, gender, health and pop culture. Her
articles and interviews have been featured in Essence, The Advocate,
Hello Beautiful, Glamour, Al-Jazeera, The Body and the Huffington
Post. Follow her on Twitter.