LIANE HANSEN, host:
Four-year-old Maya Chamberlin was diagnosed with a rare blood disease known as HLH in September 2009. 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.
Maya's mother, Dr. Mina Chamberlin, joins us now from Cincinnati, Ohio. Welcome to the program.
Dr. MINA CHAMBERLIN (Physician): Thank you very much. We really appreciate you having us on your program.
HANSEN: Why does Maya's mixed race background make finding a match more difficult?
Dr. CHAMBERLIN: Bone marrow transplant or any transplant, for that matter, is dependent on finding the right HLA type. And HLA is basically inherited, so the probability of finding a suitable donor is highest among people of your own race. Now, it's difficult with Maya because she comes from a mixed genetic background. 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.
HANSEN: What are the chances of finding that match?
Dr. CHAMBERLIN: The chances are, I would say, pretty low. Pretty, pretty low. There are about 13 million registered donors worldwide. We don't have one in that pool. But it is not hopeless. I mean, I know there is that one person out there.
HANSEN: She has a younger brother, Jaden. Could he be a match?
Dr. CHAMBERLIN: Siblings have a 25 percent probability of a match. And unfortunately, Jaden is not a match.
HANSEN: How do bone marrow transplants differ from organ transplants when it comes to finding donors?
Dr. CHAMBERLIN: In terms of HLA typing for bone marrow donation, the outcome in terms of survival is dependent on a perfect match. However, in transplants like kidney transplants, you don't have to be a full match. So, you have a little bit more flexibility, whereas with bone marrow transplant, you do not have that kind of flexibility.
HANSEN: Do you think people might be reluctant to register for bone marrow transplants? I mean, in other words, to register as a donor, because it appears that, I mean, donating bone marrow is difficult and painful. Is it not?
Dr. CHAMBERLIN: Yeah, that's just one of the misconception that I really, really want to clarify. It's performed under anesthesia, so you will absolutely not feel any pain at all from the procedure. The only pain you feel is perhaps a little bit of soreness after the procedure is over, and you're awake. You know, it's like the soreness you feel after having worked out strenuously.
HANSEN: I'm speaking with Dr. Mina Chamberlin about the difficulty of finding a bone marrow donor for her daughter, Maya. How is Maya doing?
Dr. CHAMBERLIN: Maya is stable right now. 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. I mean, she's such a tough little girl.
HANSEN: How are you doing?
Dr. CHAMBERLIN: I am much better now. Still have difficulties many times. 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. And if we don't have a full match, we're going to have to go for a mismatch donor.
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 and need your help, regardless of your genetic background. And miracles happen. Miracles happen. You could be somebody completely different race and still turn out to be a match for Maya or for another four-year-old little girl that's waiting.
HANSEN: Dr. Mina Chamberlin is the mother of a four-year-old girl named Maya, who is currently waiting for a bone marrow transplant, and they are looking for a bone marrow donor. She joined us from Cincinnati, Ohio. All I can say is the best of luck to you, Mina. And thank you so much for taking the time to tell your and Maya's story.
Dr. CHAMBERLIN: Thank you so much.
HANSEN: For more on how to become a bone marrow donor, go to our Web site NPR.org.
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