Lillian Yang is a hilarious, little seven-year-old who tells jokes and writes poems. She loves ice skating, swimming, dancing and reading “Magic Tree House” books. But that’s all on hold because she has AML, a blood cancer.
While a bone marrow transplant could save her life, finding a donor has been challenging because Lillian’s ethnicity is Chinese and there aren’t enough Asian donors on the registry.
Lillian’s bother Jerry, now 12, was diagnosed with aggressive AML at age 3. And even though he’s had several complications due to his bone marrow transplants, he’s in remission.
As it turns out, Lillian was born while Jerry was sick. She was healthy until last fall when she became pale and red spots began appearing on her skin, which was a sign of a low platelet count. A skin biopsy showed both Jerry and Lillian had a genetic mutation that made them predisposed to AML.
“Because of this genetic mutation, her best chance for cure is to have a bone marrow transplant,” says her mother, Cindy Wu.
Searching for a donor
Lillian has been in the hospital since September 2020. After her fourth round of chemotherapy, doctors are eager to do a bone marrow transplant.
Her parents hoped that she’d have the same success that Jerry did with his bone marrow matches, the first donor being a 10 out of 10 match and his second donor being nine out of 10.
“I just didn’t realize that when you couldn’t find a match, how helpless you would be,” says Wu.
When she thinks back on the donors who saved her son’s life, she’s appreciative. “I just feel very grateful to the donors who saved my son’s life,” she says. “My son wouldn’t have been here if not for them.”
Now she’s looking for the same opportunity for Lillian. They’ve been searching for a donor on the Be the Match registry, which manages the largest and most diverse marrow registry in the world. But currently, no one in the U.S. is a match. And unfortunately, both the Chinese and Taiwanese registries are closed due to COVID-19.
The importance of Asian donors
Both of Lillian’s parents are from Shanghai. And patients are most likely to match someone of the same ethnicity. But Asian patients only have a 41% likelihood of finding a bone marrow match on the registry, compared to 77% of white patients.
“In the Asian community, we generally have a fear because we don’t know what the bone marrow donation process is like,” says Wu. “Just from the words, we feel it might be with something that’s dangerous to the donor’s health.”
She encourages the Asian community to not be hesitant.
“Because of the technology and medical advancements, the bone marrow donation process is very safe and it’s a lot easier, like a peripheral blood donation.”
Getting registered to be a donor is as easy as swabbing your cheek and sending the swab to Be the Match.
During the pandemic, Lillian’s family held drive-through events to swab potential donors.
Finding Lillian a match
While the Lillian knows that she and her brother share the same disease, they’ve grown close during this tough time. They play board games and video games like Minecraft.
“She is a very, very optimistic girl, she gives me a lot of hope and strength to go on,” says Wu.
Now Lillian’s mom is calling on ethnic communities to get swabbed and join the registry, explaining they might save a life.
“We really need them to register for Be the Match so people like us, will have a better chance of finding a match and potentially finding a cure.”