Eleven-year-old Imani looks healthy today, but her doctors don’t know how long that will last. Two years ago, she was diagnosed with myelodysplastic syndrome (MDS), a disease of the bone marrow and blood. Though Imani’s disease is mild now, her doctors are watching her closely. MDS can grow more severe over time. It can also change into a fast-growing, severe leukemia. Her doctors say a marrow transplant is the only cure.
But first Imani needs a matching donor. She is bi-racial — African American and white — and that fact has made her search for a match more challenging. Right now, the chance of finding a match on the Be The Match Registry is close to 93% for Caucasians, but for African Americans and other minorities, the chances can be as low as 66%.
A match found and lost
Even though Imani’s doctors had told her family that finding a match would be difficult, when they first searched the Be The Match Registry, they found an ideal match. Imani and her family prepared for transplant. For Imani’s mother, Tammy, it was difficult. Tammy donated marrow and saved her own brother’s life when she was fifteen. Now, twenty years later, her brother is doing well. But Tammy remembers how hard the chemotherapy and radiation used to prepare for transplant were on her brother, how hard his recovery was. It was hard to plan to put her own daughter through such a harsh treatment when Imani looked so healthy and full of energy. But she steeled her resolve and they prepared to go forward.
Then, just a week before Imani was scheduled to begin her pre-transplant treatments, they learned that her donor had fallen through. She did not have a donor after all. Because of transplant confidentiality guidelines, her family does not know the reason the donor was unable to donate.
Waiting and raising awareness
A close match between patient and donor is the most important factor in selecting the best bone marrow donor for a patient. The closer the match, the better for a patient. Imani’s doctors have identified partially matched donors for her on the registry, but Imani’s family has decided to wait to pursue transplant until a closely matched donor is available – as long as Imani remains healthy. For now, they are trying to let Imani live the life of a normal kid. She loves dancing and soccer, riding her scooter and bike, attending horse riding camp, and day camp in the summer, and spending time with her family and friends.
And Imani’s family is working with Be The Match to encourage others to join the registry – especially people of African American and mixed-race heritage. Meanwhile, Imani’s doctors keep a close eye on her disease. Every six months her doctors do a bone marrow biopsy and they check in regularly to be sure she’s not developing any new symptoms. If her MDS develops into leukemia, she will need a transplant quickly. Imani’s family hopes her match joins the Be The Match Registry before that happens.
July is African American Bone Marrow Awareness Month
Like Imani, many African Americans and other minorities can’t find marrow donors. The tissue types used for matching patients with donors are inherited, so patients are most likely to find a match within their own racial or ethnic heritage. There are 9 million people on the Be The Match Registry, but only 7% are African American. While the number of transplants that the NMDP facilitates for African American patients has doubled since 2004, more people of African American descent are urgently needed on the Be The Match Registry so that more lives can be saved.
Help patients like Imani
This July, we’re asking for your help to spread the word about African American Bone Marrow Awareness Month and the need for more people of African American descent to step up and join the Be The Match Registry.
- Join the registry – People from every ethnic and racial background are needed
- Tell your friends and family – Click Like at the top of this story to share it on Facebook, or see other ways to spread the word
- Make a financial contribution – Your gift adds donors to the Be The Match Registry, helps patients afford transplant and advances medical research