The white family of an adopted 9-year-old Black girl who has a blood disorder is pleading with the Black Kansas City area community to register with the National Marrow Donor Program in a bid to save their daughter.
According to the Kansas City Star, little Emma Hall was diagnosed with aplastic anemia, a disorder which causes her body not to produce enough blood cells just last December.
The disorder leaves patients feeling tired and they are also more prone to infections and bleeding. A bone marrow transplant can help prompt more blood cells to grow in the affected person, but in such a case, race does matter.
As the Star notes, the ethnic background of the patient is key to finding the right donor because markers used in matching are inherited.
The rest of the Halls—who are white and adopted Emma at birth in 2010–cannot help the sick child, so they are turning to Black Kansas City residents, asking them to register their DNA with the National Marrow Donor Program.
“Ethnicity does not matter under any other circumstance. It doesn’t matter in love. But with this it matters,” her mother, Alisa Hall, who described the 9-year-old as “the bravest person” she knows, told the newspaper.
The disorder has already taken its toll on Emma, who no longer has the energy to run around and play with her older brothers, 17-year-old Jonas and 16-year-old Jaden, and other neighborhood kids. She has been in and out of the hospital for months, even prior to being diagnosed properly, and her mother, a former educator, pulled her out of school and started homeschooling her.
However, Emma’s condition is getting worse.
“We haven’t found a match yet and we are running out of time,” Hall said. “It’s getting worse. We need to stop its progression. You can’t live without blood, and she isn’t making any.”
In a push to get the help their daughter needs, the Halls hosted a donor drive last Saturday, sponsored by DKMS, and have been encouraging everyone they meet to have their cheeks swabbed.
The Halls are also hoping to spread the message that donating bone marrow is a relatively painless process, unlike what some people believe, as the donation is done under anesthesia.
“It’s like giving blood for a couple hours,” Hall said.
Some donors have reported side effects such as aches and fatigue, the Star notes. however, being a part of the registry and potentially helping someone by swabbing your cheek is harmless.
“I stop people in the grocery stores and in Walmart. I show them Emma’s picture.,” Hall told the paper. “I tell them you may not be Emma’s match, but you can save someone’s life.”
The situation is particularly desperate as Black Americans have a lower registration rate to become bone marrow and stem cell donors, and are hugely under-represented in the donor pool.
Some of this is related to generational trauma, and a lack of trust in medical care, given the United States long and sordid history of mistreatment of African Americans in the health system, from the Tuskegee Syphilis Experiment to the case of Henrietta Lacks.
Still, the Halls remain hopeful.
“I want to see Kansas City rally like we know how to do,” Hall said. “I want every black person in the Kansas City area to show up.”
“I know God is good, even when the circumstances are not. I trust him,” she added. “I know Kansas City is going to find a match for somebody. I hope it’s Emma.”