A 1-year-old Asian-American girl’s plight shows difficulty in finding bone marrow matches within the minority community.
Omar and Henna Durani recently went from planning family vacations and selecting a Montessori school for their 1-year-old daughter, Kenza, to doing all they can to make sure she lives.
Just a few months ago, Kenza was diagnosed with acute myeloid leukemia (AML), a type of blood cancer.
“It’s been quite a journey, emotionally, physically, spiritually,” said Omar in an interview with Healthline.
Much of the Texas family’s activity is now centered on medical treatment for the little girl. That includes finding a bone marrow donor who is a match for her.
Kenza has spent much of her time in recent months in the hospital undergoing chemotherapy. The Muslim girl went home for about 10 days this month to celebrate her first birthday before returning for a third round of treatment.
A bone marrow donor match is someone who shares the human leukocyte antigen (HLA) protein, which is found in most cells in the body.
The best transplant outcome is likely when the HLA of the patient and donor closely matches.
However, Kenza, who is of Asian descent, has only a 2 percent chance of finding a match through the national bone marrow registry, according to her father, who is a family physician.
A bone marrow donor match is mostly likely to come from someone with a similar racial background, and minorities are underrepresented in the registry of potential bone marrow donors. Caucasian children have around a 75 percent chance of finding a match, Omar said.
While Kenza’s parents both grew up in the Dallas area, her father’s family was originally from India, and her mother’s family was originally from Pakistan.
People with a mixed ethnic background, like Kenza, also tend to have a lower chance of finding a match, Omar said.
The more people registered to be bone marrow donors who share racial or ethnic backgrounds, the more likely they are to find a match.
Only 3 percent of people in the national registry are of Asian descent, compared with 67 percent for Caucasians, according to Amy Roseman, donor recruitment coordinator for DKMS in Dallas.
DKMS is an international nonprofit organization that fights blood cancer and blood disorders, such as sickle-cell anemia.
The nonprofit organizes activities such as bone marrow donor recruitments, donation drives, and fundraisers to cover donor registration costs. It is leading the charge to find a donor match for Kenza.
Other minorities are also underrepresented in the Be The Match registry. The website says that more potential donors are needed, particularly African-Americans, American Indians, Alaska Natives, Asians, Latinos, and people of multiracial descent.
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In order to increase the chances of finding a bone marrow donor match for Kenza, various people and organizations have organized bone marrow donor recruitment drives.
It started with the mosque in her family’s community, and has since spread to other mosques, synagogues, churches, colleges, local stores, and other venues around the country.
“We’re blessed to have an amazing support network of family and friends,” said Omar.
A Facebook page and website have also been set up for Kenza. Since May, about 60 donor drives inspired by her have registered more than 2,000 new potential bone marrow donors around the country, according to Roseman.
“It went viral to a certain extent,” said Omar.
He spoke about how beautiful it is to see in these challenging, sometimes xenophobic times, people of every race, religion, and ethnic minority helping to save lives.
“We’ve just been so blown away with gratitude and humility,” he said. “I don’t even know how to put it into words.”
Anyone who registers to be a donor remains in the database of potential donors until they turn age 61, unless they request to be removed. A cheek swab is done to test for being a match.
People can potentially help the 14,000 patients currently seeking a matching donor, as well as those searching in the future. Registration can be done at a community event, a donor recruitment center, or online.
In 25 percent of cases, bone marrow is harvested from the back of the pelvic bone while the donor is under anesthesia. In 75 percent of cases, donors can provide peripheral blood stem cells, which are harvested through a nonsurgical procedure.
Kenza’s family was fortunate that her cancer was diagnosed early.
Her father noticed that she had a swollen lymph node a month before her diagnosis, and gave her an antibiotic for it thinking she might have an infection. However, her condition did not improve.
The day before she had an appointment scheduled with a specialist, she fell from a changing table and her father took her to the emergency room. He asked the ER doctor, whom he knew, to perform a blood test.
The results showed Kenza was at significant risk for a stroke or heart attack, and was immediately transferred to an intensive care unit.
If Kenza is unable to find a bone marrow donor match in the coming weeks, her father plans to be a donor for her. However, she only shares 50 percent of his genetic material, whereas a sibling might provide a better match.
A recent biopsy did show that Kenza’s condition has stabilized.
“That’s very, very good news,” her father said.