Girl and world need more donors
Hallie’s Heroes, the Denton-based charity leading a charge against the bone marrow disorder Diamond Blackfan anemia, has been steadfast in the fight since its inception in July 2015.
In the 14 months that have passed, the local charity has helped “swab” — collect DNA from the inner cheek of someone registering as a bone marrow donor — more than 2,300 people, leading to donor matches for 10 other patients in need of a marrow transplant.
“We celebrate each match as if it were for Hallie,” said Elyse Barnard, founder of Hallie’s Heroes and mother of 8-year-old Hallie. “The experience has been more than we could have ever hoped for.”
Hallie, a Denton elementary student, was 13 months old when she was diagnosed with Diamond Blackfan anemia, or DBA, a rare blood disease that prevents bone marrow from producing enough red blood cells. Her parents and two siblings are not matches for Hallie.
About 800 people in North America have DBA, and Hallie’s voice has been among the most vocal in attempts to raise awareness about the disease. Now, as a result of the efforts of Hallie and other “Heroes,” the conversation is shifting to an international stage.
DKMS, a nonprofit founded 25 years ago in Germany, recently named the young activist as its youth ambassador in effort to shed light on different types of blood cancers and disorders.
“Hallie’s Heroes has committed to help DKMS raise awareness and fund registration fees [of potential donors],” said Amy Roseman, a representative for the nonprofit. “We want to educate the public on what they are signing up for, [so] that they are ready, willing and able to give someone a second chance.”
Roseman said nearly 14,000 people around the world with a bone cancer or disorder are currently searching for a bone marrow donor, with only about a 40 percent chance of locating one.
DKMS’s goal, she said, is to “change that statistic” for the better.
When asked about her own ambitions in the midst of the fight, Hallie’s answer came naturally: “Swab everyone in the USA!”
Her mother and Roseman both discussed common misconceptions about the choice to become a bone marrow donor.
“Most often, about 75 to 80 percent of the time, patients need stem cells,” Roseman said, comparing the process to the donation of plasma. “Blood is removed from the arm, the stem cells are taken, and the blood is put back. It takes about as long as it would to watch three episodes of whatever television show you’re binging.”
The remaining patients need bone marrow — most of them babies, Roseman said. This process is slightly more invasive, with marrow is taken from behind the hip bone while the donor is under anesthesia.
“DKMS makes it easy,” Elyse Barnard said. “It’s not like you get wheelchaired into a hospital and then stuffed back on a plane — they take care of you.”
Willing donors may sit on the donor list for years without ever being selected as a match, Barnard said, though in the event that one is identified as a match, DKMS will work with that person every step of the way.
“You never know what that person might go on to do once they’ve been given a second chance,” she said, adding that the entire experience with Hallie’s Heroes and DKMS has left her and her family “feeling empowered.”
“When you have a child that’s sick, there aren’t a lot of options, but we’re feeling blessed,” she said. “We’re trying to pay it forward.”
In conjunction with her new position as DKMS ambassador, Hallie will be on the Denton Square from 4:30 to 7:30 p.m. Thursday to register potential donors.
“Then we’ll move on to China, Russia and Hungary,” Hallie said, joking about completing her mission of swabbing everyone in the country. “Also, I’ve been learning about ancient Egypt in school, so we’ll probably go there too.”
HARRISON LONG can be reached at 940-566-6897 and via Twitter at @HarrisonGLong.