While her friends are planning for a summer full of outdoor activities, Hallie Barnard, who turns nine later this month, knows she’ll tire while they remain full of energy.
Hallie was diagnosed with Diamond Blackfan Anemia when she was 13 months old. This rare blood disorder keeps her bone marrow from producing red blood cells. In order to survive, Hallie needs a bone marrow transplant.
“All of us have an exact genetic twin who is not related to us,” said Amy Roseman, the donor recruitment coordinator for DKMS, an organization that fights blood cancer.
In order to successfully receive a bone marrow transplant, it must come from a genetic twin. Approximately 30 percent of people have a genetic twin within their family.
Hallie’s brother and a sister are perfect genetic twins for one another, but not for Hallie. Hallie is one of the 70 percent of patients who have to rely on a stranger to provide a second chance at life.
While there are approximately 14,000 people waiting for a bone marrow match, less than 2 percent of the United States is actually registered to donate.
“It’s like winning the lottery,” said Jennifer Scott, vice president of a non-profit that the Barnard family started to save their daughter. “Those who are registered have about a 1 percent chance of being a match to anyone, the odds are not good.”
But Hallie and her family have not given up hope. Hallie’s mother, Elyse, began Hallie’s Heroes to save her daughter’s life, but it turned into something much greater.
“It started finding her match and it was totally selfish,” said Barnard. “Hallie said we’ve got to do more mama, there’s more DBA kids.”
Barnard said that once they found out how many people were waiting for a bone marrow match, the question became “what can we do to help them?”
“Hallie led us to do more,” said Barnard.
Barnard said the catalyst to start Hallie’s Heroes was two years ago when four children with DBA died in the same month.
“We fell apart and we came back together stronger,” said Barnard. “We said we can’t be complacent with her being stable right now because we don’t know what we’re up against.”
Barnard’s friend Angie Medlock took her out to dinner to cheer her up, when they began to realize that there was more work to be done.
“I want to do a grass roots thing.” Barnard told Medlock about trying to find bone marrow matches on their own. “Maybe we can swab people.”
Medlock responded, “I think we can make a charity.” Barnard then contacted Scott, who made the charities bylaws.
“It literally started with me calling friends and acquaintances,” Barnard said. “I knew they were talented people and I said, ‘I need your help to save my daughter.’”
Last year, Hallie’s Heroes raised more than $7,000 for DBA research. The charity also gives grants to help families with DBA children pay for medical expenses.
“Its excruciatingly expensive to keep these children alive,” said Barnard. “Our medical bills are through the roof and there are other families who are dealing with the same thing.”
Barnard says that being able to provide help for families like hers has been a big deal because she understands how much families need that help.
Hallie’s Heroes has swabbed more than 3,000 people and found 26 matches for other people with life threatening diseases.
“Every match we find, although it’s not Hallie’s match, we celebrate it like it is Hallie’s match because it’s a huge win for us,” said Barnard. “We’re very excited to be a part of their miracle because we know how much of a blessing it is and how much people need it.”
Steroid shots currently keep Hallie alive, but there is no telling when her body will become resistant. Once that happens, Hallie will need a blood transfusion every three weeks to survive.
Currently, a bone marrow transplant is Hallie’s only option. While there may be other ways to help, not much is known about DBA.
“There’s no research because not enough children have it,” said Barnard. “There’s no government funding. Every research dollar that’s funded is by parents and family and friends.”
Barnard remembers when Hallie first got sick and people told her it happened for a reason. “But God doesn’t make a child sick,” she thought.
Throughout Barnard’s time dealing with her daughter’s illness and advocating for help, she began to see things differently.
“I think there is a reason,” said Barnard. “Maybe it’s her name and her face that will lead people to swab and I’m okay with that because while she’s stable now, we might as well find as many matches as we can for other families.”
Swabbing entails rubbing Q-tip type material on the inside of each cheek for 30 seconds. The DNA produced is sent to a lab where it is tested to see if it matches with those waiting for a transplant.
Craig Marcho, a support engineer for Microsoft, donated bone marrow to save a life and said it was an easy and painless experience.
“I took a few shots before the donation that make me produce extra stem cells. Then I was put on a machine where I sat for a few hours. They collected the stem cells and that was about it,” said Marcho.
After collection, the donated stem cells have to be put into the patient within 24 hours. Marcho matched with someone from Paris, and said he felt like the experience was something out of a movie.
“They took my stem cells, put them in a cooler and flew them straight to Paris,” Marcho said. “Then I got a call that night saying that the transplant was a success.”
Marcho said the feeling of knowing you saved somebodies life is amazing.
“Life is always about yourself and how much fun you can have and things you can do and being selfish,” said Marcho. “But as I got older and going through this experience I really realized how important it is to help others.”
Marcho donated about three and a half years ago and said he would gladly do it again. Although he does not know who he saved, he said that is not what’s important.
“It doesn’t really matter if I can meet them here, someday I’ll meet them in heaven,” said Marcho.
To register to become a donor, visit DKMS.org. If you are contacted, you will be placed in a universal database and could be called tomorrow, or in five years, to donate.
If you match to a baby or a child under three, the process for donating is different.
“A donor would be asked to donate actual bone marrow, which is extracted from the back of the pelvic bone while he or she is under anesthesia,” Roseman said. “Including recovery from the anesthesia it takes about two hours.”
Roseman says that donors may become sore for several days after the procedure. She says that soreness goes away, but the feeling of saving a life lasts forever.
“We didn’t think it would ever happen to us,” Barnard said. “You shouldn’t wait until it happens to you because there’s so many families out there that need help now.”