This story sheds light on the need for diverse bone marrow donors
A pregnant mother of three is desperately searching for a bone marrow transplant to save her life after being diagnosed with an aggressive form of leukemia. Unfortunately, none of the 19 million (yes, million) registered donors are a match for her currently on Bethematch.org, the largest and most diverse registry in the world.
Susie Rabaca, 36, from California was diagnosed with acute myeloid leukemia (AML) and is now one of an estimated 12,000 Americans waiting for a bone marrow donation. However, for Rabaca there is more urgency now — she’s expecting twins.
Diagnosed in September, Rabaca bravely decided to move forward with her pregnancy and begin chemo immediately at the recommendation of her doctors. After two rounds, the babies appear to be doing well and she will deliver them on December 6. AML is among the most aggressive forms of leukemia, but can often only be cured with a bone marrow transplant.
The issue for Rabaca is that her tissue profile is difficult to match because she is both Latina and Caucasian. “There are 19 million people on the Be The Match registry. None are a match for Susie. We need to spark a movement for more young, diverse men and women to join the registry. The need is urgent so we can try to save this young mother’s life,” Amy Alegi, Vice President, Registry Growth & Development of Be The Match tells Scary Mommy.
“Bottom line,” she continues, “if you are white you have a 77 percent chance of finding a life-saving match. But, of the 19 million potential donors on the Be The Match Registry, just 7% are Hispanic and 3% are multiracial. We need more Hispanic men and women on the registry. Our goal is to democratize cellular therapy so everyone has a chance to live.”
Rabaca intends to have a transplant just after her twins are born on December 6, but she’s still desperately searching for a match. With three kids at home and twins on the way, this is as urgent as a request can be.
“I want us to spark a movement,” Alegi emphasizes. “I want to make people act. Susie is doing everything possible to provide a healthy outcome for her unborn twins and herself – yet without a perfect match on the registry, her battle will be nearly impossible to win. We are asking people of diverse ethnicity to join the Be The Match registry.”
Matches are harder to find for minority and mixed-race people. Rabaca’s sister was not a match nor were the tens of millions of people in the database. In order for a bone marrow transplant to be safe and effective, a donor and recipient have to have sufficiently similar DNA, at least in a group of genes called the HLA system.
“People of the same ethnic groups tend to have the most similar clusters of these particular genes,” Bethematch.org says.
“What I need people to do is join and they send you a kit, a little swab for your mouth, send it back, and if you’re my match it’s as simple as a blood draw, and that can possibly save my life,” Rabaca said in an interview with Fox11.
Be The Match registry includes donors from across the world. If you live in the U.S., you can join through bethematch.org. But anyone can donate. If you live outside the U.S., please click here to learn more about donating.
Visit Join.BeTheMatch.org/Susie to fill out a brief health history and a swab kit will be sent to your home so you can be registered. Only donors who are a prospective match will be called for further testing.