Michelle Nguyen is just like any other 14-year-old girl; she likes hanging out with her friends and playing volleyball. She loves math, she goes on camping trips with her church, and she wants to be a nurse when she grows up.
But there’s something that makes Michelle different from typical 9th graders; the Johns Creek, Ga. native has thalassemia major, an inherited blood disorder that causes excessive destruction of red blood cells and leads to chronic anemia. Because of her disease, Michelle visits the Aflac Cancer and Blood Disorders Center at Children’s Healthcare in Atlanta every three weeks for blood transfusions.
“I really don’t like to go to the doctor,” Michelle told TIME. “Sometimes it holds me back from going to school and I miss tests and I have to cram for everything. “
The transfusions, however, are a temporary fix to a major illness; they improve her quality of life and give Michelle enough energy to be able to compete on her school’s volleyball team, which she plans on joining next year, but the only cure for thalassemia is a bone marrow transplant.
If Michelle had siblings, the search for a donor would be easier because each sibling has a 25 percent chance of being a perfect genetic match. Like about 70 percent of patients in the U.S., Michelle is relying on the national bone marrow registry for a donor. She has yet to find a match.
Michelle, a Vietnamese American, is not alone. Asians and African-Americans are not well represented on the national bone marrow registry. There are 10.5 million potential donors on the list and only about 7 percent are Asian and another 7 percent are African-American. Sixty-seven percent of potential donors on the list are white.
Dr. Jeanne Boudreaux, Michelle’s doctor and director of the Aflac Center, says patients are more likely to find donors from within their ethnic community. Asians have about a 73 percent chance of finding a match from the registry, for whites the likelihood is 93 percent, according to data compiled by the National Bone Marrow program.
“For these communities, there is not a high chance of finding a match,” Boudreaux said. “It’s a simple procedure to be on the list, but there may be other cultural influences or beliefs that prevent people from registering.”
A 2012 study by the University of Pittsburgh found that 60% of potential donors from minority communities opt out before donating, largely due to religious objections and mistrust of the medical system.
There have been many efforts to increase bone marrow donation and registry within ethnic communities (one of the most highly publicized stemmed from Good Morning America anchor Robin Roberts’ battle with the blood disease MDS) but Michelle is taking a more creative approach. The teen is the latest winner of the Aflac Holiday Duck design contest, and the 2nd patient who has designed the duck that is sold in Macy’s stores across the country. From her design, the Aflac duck is ready to hit the slopes this winter in a pair of skis, a hoodie, and goggles.
The proceeds from the duck’s sale will go to pediatric cancer centers across the country to help fund studies and research. Since the design contest began in 2001, Aflac has raised over $3 million for pediatric cancer centers and research.
“We’ve got a legit issue here that needs attention,” Sullivan said. “ There are lots of young children who require bone marrow transplants, but it’s difficult for them to find donors. We’re going to promote Michelle in our effort to get more people to register.”
Michelle, who wants to be a nurse when she grows up to help “kids like me,” is hopeful that the duck will raise awareness.
“I hope someone out there will donate their bone marrow to me,” she said.