Babies aren't supposed to be blue.
Later, she would learn from her baby's anguished wailing just how excruciating his periodic pain "crises" were. And how there was little Lawrence could do to soothe the throbbing in his back, bones and joints that led to about 50 hospitalizations before he turned 2. Nothing she could do to bring Brian any motherly comfort.
So when they heard several years ago about promising results showing a cure for the disease with bone-marrow transplants, Brian was eager to try. Particularly after sickle-cell complications shredded his right hip — leading to a hip replacement for the then-20-year-old, who now lives in West Palm Beach. For once, he allowed hope to creep in.
But four years later, after a string of donor drives, he is still popping oxycodone to take the edge off his pain.
No match yet. Tragically, coming up empty is all too common for blacks like Brian. There are roughly 9 million potential donors in the Be The Match Registry managed by the National Marrow Donor Program. Yet, only 7 percent of those are of African descent.
Overall, minorities are far less likely to find a compatible donor on the registry than whites, who enjoy an estimated 93 percent shot of finding a marrow match that might be their best shot of treating or curing leukemia, immune disorder or other diseases. Since 2004, the National Marrow Donor Program has doubled the percentage of transplants it has facilitated for black patients; nevertheless, at 66 percent, folks in the skin I'm in still face the longest odds.
Problem is, doctors match patients with donors using inherited traits. So, the best shot for the sick is finding someone with a shared racial or ethnic background. But the biracial heritage of many blacks is a wild card that ratchets up the difficulty.
"Fewer African-American members mean fewer potential matches for African-American patients, whose only hope for a cure is to receive a transplant," says Adele Doctor, director of programs for Kids Beating Cancer. The Orlando nonprofit recruits Central Florida donors for the Be The Match Registry. Last year, the group brought more than 2,700 new potential lifesavers into the fold — generating more than 160 preliminary matches.
Next month, in conjunction with African American Bone Marrow Awareness Month, Kids Beating Cancer hopes to continue shoring up the numbers. It's ramping up its "Do Something Big" community committee. This band of volunteers raises awareness and recruits new donors through marrow drives at businesses, churches and civic organizations.
And yes, I'll put my money where my mouth is. Literally. I'll take the test, which involves swabbing a Q-tip inside your cheek. Completing the interminable health survey will be the most painful part.
No pain, big potential gain.
Even if you're blessed with the opportunity to save a life, chances are that being heroic won't hurt too much: Three out of four times donors are asked to help through a peripheral blood-stem-cell donation. It's a nonsurgical outpatient procedure similar to donating platelets or plasma.
The clock's ticking. Anyone interested in joining the Be The Match Registry or the Do Something Big committee, or hosting a marrow drive can call Adele Doctor at 407-894-2888, or drop her a line at firstname.lastname@example.org.
Meanwhile, thousands like Brian, a wannabe physical therapist, wait. And hope. And dream.
"I couldn't imagine what it would be like to be without sickle cell," he says. "I do [imagine] all the time. It would mean so much to me. There are no words."
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