Olathe family searching for bone marrow donor for 9-year-old with rare disease

Data pix.

OLATHE, Kan. --  A nine-year-old Olathe girl is searching for her perfect match.

Emma Hall needs a matching donor for a bone marrow transplant to treat aplastic anemia, a rare disease that happens when the body doesn't produce enough new blood cells.

"She's the bravest soldier," Alisa Hall, Emma's mother, said.

Emma has to be brave. Last year around Labor Day, she got sick with Hepatitis. Then, her parents Gregg and Alisa Hall learned about her rare disease.

"Emotionally your heart aches for your daughter," Gregg Hall said.

Emma has about a quarter of the blood she should. She doesn't have much energy, and because she's on immunosuppressive therapy, she can't live the way she used to before her diagnosis.

She can't get her PICC tube wet, she can't afford to get injured and she can't be around many people.

"You had to quit gymnastics. You had to quit soccer. We're home schooling now, so we're not in school full time anymore," Alisa Hall said to her daughter.

To conquer the disease and get back to the life of a healthy 9-year-old, Emma needs a bone marrow transplant.

Joining the bone marrow registry is easy. Organizations like DKMS and Be The Match will send you a donor swat test kit if you request it. You just swab your cheek and send in your sample.

But it's much harder to find an actual match.

"We are looking across the world really for a match," Alisa Hall said.

The Hall family has held several drives, but no one has been the match Emma needs. Emma is adopted, and her parents and brothers aren't matches. Emma is black and her parents are not, which is likely why they weren't donor matches.

"Ethnicity only counts in bone marrow. She is our perfect match for our family," Alisa Hall said.

Dr. Sunil Abhyankar is the bone marrow transplant physician at KU Cancer Center.

He doesn't treat Emma but said donors are more likely to find a match in someone from the same ethnic group as them.

"It can be a challenge. It depends upon the ethnicity of the patient. Say the patient had Indian background like me or African American, Hispanic, then the donor pool is not that large," Abhyankar said. "And also the genetic makeup of individuals with these particular backgrounds is also very diverse, and so it's hard to find a donor in that situation."

Abhyankar said Caucasian patients have around a 70% chance of finding a match because of a larger donor group. For black people, the likelihood of finding a match is around 10 or 20%.

"That shouldn't be." Alisa Hall said. "We should all be looking for ways to help each other out. We're all neighbors. We're all friends. If we can just look to help each other out in such an easy way."

The Hall family's friends are planning donor drives for Emma across the country.

"We may not find Emma's match in this particular drive, but we might find somebody's match," Alisa Hall said.

That's why Emma's family said everyone from all backgrounds should come together and try to help someone in need of a bone marrow transplant.

"It's a life changing situation," Alisa Hall said. "And really it's a life threatening situation. When it's your kid you're doing everything you can to make her life as great as it can be and as long as it can be."

Emma's family is relying on their faith to get them through this period of uncertainty.

To join the National Bone Marrow Registry, you can request a test kit from DKMS or Be The Match. If you would like to hold a drive for Emma, contact DKMS. You do not have to be in the Kansas City metro area to hold a drive.

Notice: you are using an outdated browser. Microsoft does not recommend using IE as your default browser. Some features on this website, like video and images, might not work properly. For the best experience, please upgrade your browser.