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Race impedes bid for bone marrow transplant for 3-year-old

June 3, 2019 GMT
Charles Myers holds a photo of his 3-year-old granddaughter Ailani, on his cell phone on Thursday, May 23, 2019. Ailani was diagnosed with leukemia earlier this year and needs a bone marrow transplant but hospitals have been unable to find a donor. Myers is holding an event to register donors and help search for a match at Keeper's Cut Meadery, which he owns in Marion, N.C. (Angeli Wright/The Asheville Citizen-Times via AP)
Charles Myers holds a photo of his 3-year-old granddaughter Ailani, on his cell phone on Thursday, May 23, 2019. Ailani was diagnosed with leukemia earlier this year and needs a bone marrow transplant but hospitals have been unable to find a donor. Myers is holding an event to register donors and help search for a match at Keeper's Cut Meadery, which he owns in Marion, N.C. (Angeli Wright/The Asheville Citizen-Times via AP)

ASHEVILLE, N.C. (AP) — For the past couple months, 3-year-old Ailani Myers has had more bad days than good. May 23 was one of those rare exceptions her dad describes as an “almost pre-diagnosis day.”

“She had fun and felt good,” Kurt Myers said. “We got to do things outside and she didn’t even have to wear her mask. It was a nice day.”

Unless Ailani is able to receive a bone marrow transplant, it’s unlikely that she and her family will ever be able to resume the lives they had to put on hold when the bubbly child was diagnosed with an aggressive form of leukemia in early March.

In the months since, Ailani has spent more time in hospital rooms than she has on swing sets or at gymnastics classes, said her mother Princecine Johnson.

Ailani has undergone several rounds of chemotherapy that made her sick and lose her hair. And through it all, she’s shown strength that her parents say surpasses their own.

Though she has courage in spades, it’s bone marrow that Ailani needs and unfortunately that’s going to be difficult to come by, according to Amy Schatz of Be The Match, a bone marrow donor registry.

In order for bone marrow transplants to have the highest rate of success, the donor and the recipient need to be of the same ethnic and racial background. The challenge for Ailani, who is half black and half white, is that the majority of prospective donors registered with the National Marrow Donor Program, which operates Be The Match, are white.

“It’s difficult for any (multiracial) person to find a match on the registry,” Schatz said, explaining that while white people have a 77 percent chance of finding a perfect match on the registry people of other racial and ethnic backgrounds have much lower odds.

Latinos, for instance, have a 46% chance of finding a match, and blacks have a 23% chance at a match, according to Schatz.

She didn’t know how likely it is to find a multiracial match though the registry, only that the chances are even lower for people like Ailani, whose life now depends on it.

“The alternative of not getting a bone marrow transplant I think is grim,” her father told the Citizen Times while FaceTiming with Johnson from the Ronald McDonald House they are staying in near Johns Hopkins Hospital in Baltimore.

Myers, 37, is active duty Navy, and Johnson, 43, is retired from the Navy. Myers had been reassigned to Baltimore, but Ailani’s cancer diagnosis derailed the move and left them in limbo.

What further complicates matters for Ailani is that she’s an only child. Siblings typically share genetic profiles that make for bone marrow donations. In the absence of brothers and sisters, Ailani’s family members can only provide half matches at best, which can lead to serious compilations.

Schatz, who is familiar with Ailani’s case, said that finding an optimal match for the transplant, which is tentatively scheduled for mid-June, is “absolutely critical.”

“In the back of our minds, we know it’s a long shot, but we will do whatever we can to make it happen,” Johnson said. “I just know she deserves the opportunity to live.”

Though her life was greatly altered a couple months ago, Ailani has rarely let her leukemia wreck her cheery disposition, her parents said. She recently spent her 3rd birthday undergoing chemotherapy.

“She takes all this better than we do,” Myers said. “She’s very strong, incredible brave. It’s a lot to ask a 3-year-old to spend at least 40 hours a week in a hospital, but she still maintains her happiness.”

Myers and Johnson say that Ailani spends her time singing and dancing. She loves the color pink and princesses; her favorite princess — at least for the moment — is Tiana.

Friends and relatives have showered Ailani in gifts during the past couple of months, so much so that that Myers and Johnson have had to hide most of them and dole them out gradually to avoid overwhelming their daughter.

The gift Ailani truly needs, however, has yet to be given. She’s still waiting on a marrow donor.

Speaking to the Citizen Times at the newly opened Marion meadery that his children run, Charles Myers, Kurt’s father and Ailani’s grandfather, said a marrow donor who matches Ailani would be giving the gift of “hope, life, love.”

“We’re pleading because it’s her life and someone might be able to save her,” he said. “What greater gift could someone give?”

Charles Myers will be holding a bone marrow donor registration drive at his business, Keeper’s Cut Meadery, in downtown Marion, from 2-6 p.m. June 5 from 2 p.m. to 6 p.m.

For those unable to make it to the registration drive but interested in helping Ailani, Be The Match registers donors online, Schatz said. To register for Ailani, visit the organization’s webpage or text “4Ailani” to 61474.

“Finding a match would mean everything,” Johnson said. “My baby, my only child has a chance, an opportunity, to live a normal life — hopefully a healthy normal life. A match would mean the world to me. It would be like giving my child life all over again.”

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Information from: The Asheville Citizen-Times, http://www.citizen-times.com