The doctor's words crashed down on Darrick Cornelius like a thunderclap."If your daughter doesn't get this bone marrow transplant, she could die," the doctor told him nearly two years ago, not long after his daughter, Imani, was diagnosed with myelodysplastic syndrome, a blood and bone marrow disease.
Though Imani's case was a mild form, her doctors said a bone marrow transplant was her only chance at beating the disease, which can grow more severe over time and even develop into leukemia.
But finding a donor has proven difficult. Imani, 11, (pictured above) is biracial; her father is black and her mother is white. And because of the genetic diversity among African-Americans and people of mixed-race heritage, finding a donor who is a perfect match is tough. Compounding the issue is the dearth of donors from minority communities, where misinformation and fear has kept away many prospective donors.
The tissue types used for matching patients with donors are inherited, so patients are most likely to find a match within their own racial or ethnic background or from a sibling who shares the same mother and father, according to Be The Match, an organization run by the National Marrow Donor Program, that helps connect patients with donors.
For black patients, the problem has reached near-crisis levels. The chance of a white person finding a matching donor on the Be The Match Registry is nearly 93 percent, while the chances of African-Americans and other minorities finding a match can be as low as 66 percent, according to Nadya Dutchin, a spokeswoman for Be The Match. Of the nine million people on the registry, about seven percent are African-American.
And 75 percent of the people who need a bone marrow transplant will never get one, Dutchin said.
"We need as many people as we can get on our registry," she said. "For patients it gives them a sense of hope which they desperately need. It means a fighting chance at life."
She said that what holds most people back from donating is the fear of a painful procedure. But today, the majority of bone marrow donations are done by drawing blood. Others require a surgical procedure done under anesthesia, which only causes some pain or discomfort for a few days.
Since Imani's diagnosis, Cornelius and his wife Tammi have joined forces with the organization to educate people about bone marrow donations and how giving in such a way can save lives and alleviate diseases like myelodysplastic syndrome, sickle cell and various anemias and leukemias.
"It's something we are doing every day," he said. "I'm always talking about how important it is to be a donor. I incorporate it into my conversations and when I go out into the community. I'm talking about trying to find a match and what it means to our family."
They've gotten a boost from Tionne Watkins, better known as T-Boz of TLC fame, who suffers from
sickle cell anemia. July is African American Bone Marrow Awareness Month, and Watkins helped produce a series of public service announcements to publicize the push.
"Unfortunately, myths about bone marrow donation keep many people from joining the Be The Match Registry and potentially saving a life," Watkins said in a statement. "We need more African Americans to step up."
For Imani, some days are tougher than others. But by all accounts, she is a typical 5th grader. There's soccer and dance and navigating middle school. Just this week she started day camp.
But her disease and the search for a bone marrow donor is never far from her thoughts. She knows that any day her disease could worsen, or even become crippling.
"It'd be a great, great, great thing to get a donor because I really need to get better," Imani said in a high, sing-songy voice. "It's been kind of a challenge, ups and downs when I kind of think about it a lot. But you kind of have to accept the fact that you have it and its going to be there until you find a donor."
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Two young white men were looking for a black man to assault in Mississippi's largest city when one of them ran over a 49-year-old African-American with a pickup truck after he had been assaulted, killing the man, a prosecutor said Wednesday.
From Black Enterprise:
