Hallie Barnard looks and acts like a healthy eight-year-old.
Her favorite color is purple, she likes to play with her dog, and she wants to be a veterinarian for police dogs when she grows up.
But this third grader has been waiting for seven years to find a life-saving bone marrow donor.
Hallie has a rare blood disorder called Diamond Blackfan anemia.
According to the Diamond Blackfan Anemia Foundation Inc., this inherited disorder is caused by a failure of the bone marrow to produce enough blood cells. Only 25 to 35 cases are reported each year in the United States and Canada.
Hospital visits have become normal for Hallie, who said her her parents help her be brave.
“My dad taught me how to not cry or scream or kick when I get my blood draws,” she said. “I pinch his nose. Or I just stand there and say ouch.”
Hallie’s mother, Elyse Barnard, said her daughter is currently being treated with steroids and blood transfusions.
“Steroids have kept her alive for the last seven years,” Elyse said. “It’s not uncommon for children around her age to become steroid-resistant. So once that happens she’s going to need blood transfusions every three weeks to survive.”
A successful bone marrow transplant would mean that Hallie’s bone marrow would begin to function normally. She would no longer have to depend on steroids or blood transfusions.
Elyse said a bone marrow transplant would change Hallie’s life forever.
“I think in a way it would be a rebirth for Hallie,” she said. “She would be celebrating life all over again.”
However, finding a bone marrow donor is no easy task.
“She has been on the registry since she was about 15 months old,” Elyse said. “She is looking to find a life-saving donor who shares her exact DNA genetic makeup.”
According to Be the Match, doctors “look for a donor who matches their patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type.” HLA is a type of protein that the body uses to recognize which cells belong in the body.
Despite the similarities in their DNA, neither Hallie’s brother nor her sister were a bone marrow match.
“It was like a bad Lifetime movie,” Elyse said. “I’m not going to lie, I crawled under the covers for a couple weeks. That’s what you do. You grieve.”
Judith Garcia, who works as a donor recruitment coordinator for DKMS, said only 30 percent of patients can find a matching donor within their family.
“It’s really hard to find a match because there’s less than two percent of our US population on the registry,” Garcia said. “So if we had more people on that part of the pool, imagine how many more patients would have a chance.”
Hallie’s family started a charity called Hallie’s Heroes. The organization partners with DKMS to raise money for research about Diamond Blackfan Anemia and to encourage people to swab their cheeks to collect DNA for the bone marrow registry.
The collected DNA is then sent to the national bone marrow registry which is operated by the National Marrow Donor Program.
After the donor is officially on the registry, his or her DNA information is available for doctors who are searching to find a match for their patients.
“It’s really kind of good to do,” Hallie said. “There’s other kids, like 14,000 other kids out there who have a disease and they need a bone marrow transplant.”
Hallie’s Heroes and DKMS swabbed over 3,000 people in the last year and helped 14 people find a bone marrow match.
“Everytime we find a match, it’s almost like celebrating Hallie’s match,” Elyse said. “It’s amazing because we feel empowered and we’re able to give back. To say that we’ve saved 14 other lives, that’s a really big thing.”
Elyse said they will continue to encourage people to swab while they wait for Hallie’s match.
“Come on! Come swab!” Hallie said. “I’m having to get blood draws and I don’t want to do that. I just want to be a normal kid.”
Elyse said Hallie’s optimistic attitude inspires her.
“I think that she redefines what it means to be sick,” Elyse said. “It’s amazing to see that she is such a fighter.”
Visit www.DKMS.org to learn more about becoming a registered bone marrow or stem cell donor.
Listen below to learn more about the bone marrow and stem cell donation processes.