Here at Sepia Mutiny, we have covered many bone marrow campaigns over the years. As you know by now, South Asian Americans have a 1:20,000 chance of finding a match in the bone marrow registry which is a stark difference to Caucasians who have an 80% chance of finding a match. To put that in terms of numbers, as of Jan ’09 there were 5,408,623 Caucasians in the donor registry, and only 139,460 South Asian donors in the registry. The mutiny has helped to publicize the the Help Vinay & Sameer campaigns, which added 25,000 new South Asian names to the national registry.
But there is a new little girl that needs our help, the precious four year old Maya Chamberlain.
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…. Maya’s mother, Dr. Mina Chamberlin, says her daughter’s illness, hemophagocytic lymphohistiocytosis, affects the immune system. [kpcc]
The reason that makes a match especially tough? She’s half desi.
The pool of potentially mixed-race donors is made even more difficult because blood relatives of patients often don’t qualify, and trying to find a volunteer with the right racial combination can be extremely tough, experts said. Marrow transplants are also more complex than those involving organs. [latimes]
“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.
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.”[kpcc] It’s pretty simple to join the National Marrow Donor Program – you basically just have to be healthy and under the age of 60. Once you are in signed up, you will be in the database forever to be matched if ever needed. The process to sign up to be on the bone marrow donor registry has gotten simpler over the years, all it takes now is a cheek swab. If you haven’t signed up yet, what’s stopping you? It’s easy. All you have to do is register on the marrow.org and they’ll mail you a cheek swab kit. I just ordered a kit for my mom.
The donation process is also less intrusive than it used to be. It is cost free to be a donor, local anesthesia is administered and you will be back to work within a couple of days. You can check out more about the Myths and Facts about being a donor here.
Maya’s situation is currently urgent and stable, but they still have not found a bone marrow donor for her. I would especially like to encourage the half-desis that read our site to join the registry. Who knows, you might be her one in a million match.