In September, 4-year-old Maya Chamberlin was diagnosed with a rare blood disease known as HLH. Her chances of survival depend on finding a suitable bone marrow donor.
But the Chamberlin family's search for a match is more difficult because Maya is of mixed race.
The little girl is receiving treatment for her illness in Cincinnati with her mother by her side, while her father takes care of her little brother at home in California.
Maya's mother, Dr. Mina Chamberlin, says her daughter's illness, hemophagocytic lymphohistiocytosis, affects the immune system.
"There are two components when you're fighting an infection," Chamberlin tells NPR's Liane Hansen. "One is turning it on in order to get rid of the virus. Component two is turning it off. And with HLH, the problem lies in turning it off. So what happens is the cells that are responsible for getting rid of the virus now start destroying [your] own cells in your body. So it's chewing up platelets and red blood cells and white blood cells."
Maya needs a bone marrow transplant. But so far, the family has not been able to find a match.
"It's difficult with Maya because she comes from a mixed genetic background," Chamberlin says. "I myself am from India, and my husband is Caucasian -- German and English descent -- so the combination of the two is making it more difficult to find a match."
A donor's compatibility is based on their HLA -- or human leukocyte antigen -- type. "And HLA is basically inherited. So the probability of finding a suitable donor is highest among people of your own race," Chamberlin says.
About 13 million potential donors are registered worldwide, but "we don't have one in that pool," Chamberlin says. She says the chances of finding a donor are "pretty low -- pretty, pretty low.
"But it is not hopeless. I mean, I know there is that one person out there," she says.
While siblings have a 25 percent probability of being a match, Maya's younger brother, Jaden, isn't one, Chamberlin says.
And finding a close match is especially important for bone marrow transplants, she says.
"In terms of HLA typing for bone marrow donation, you have to be a very close match -- and by close match, I mean the outcome in terms of survival is dependent on a perfect match," Chamberlin says. "However, a lot of the transplants -- solid organ transplants, like kidney transplants -- you don't have to be a full match."
Chamberlin says there's a misconception that donating bone marrow is painful and difficult. "It's performed under anesthesia, so you will absolutely not feel any pain at all from the procedure," she says. "The only pain you feel is perhaps a little bit of soreness after the procedure is over and you're awake."
Right now, Chamberlin says, Maya is stable.
"She continues to get chemo, and she will continue to get chemo until the transplant is done. She knows she's sick, but her spirits are high," Chamberlin says, choking back tears. "She's such a tough little girl."
Chamberlin says she still has trouble grasping the situation.
"I went through my grieving process -- you know, anger and bargaining, depression -- you name it. And, let me tell you, I am so scared. I am so scared because bone marrow transplant is not a benign procedure. However, the outcome is much, much, much better if you have a full match," she says.
"If we don't have a full match, we're going to have to go for a mismatch donor, and the doctors are assuring me that it's going to be OK. But I've looked at the numbers myself; I've looked at the papers myself. It's just not the same as a fully matched donor, and it's crucial, it's crucial, that we find a fully matched donor for her. It could be anyone."
Chamberlin says the perfect match for her daughter could have a completely different genetic background.
"I don't want the listeners to think, that, you know, 'I'm not mixed, I'm Caucasian. My marrow is not going to match; therefore, I'm not going to register.' But listen, Maya is one child. There are many, many kids that are waiting."
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