Hallie Bea Barnard is 9 years old, her favorite color is purple, and she’s searching for a bone marrow transplant match.
The right match would save her life, and on July 11, folks in the Dallas-Fort Worth area will have an easy opportunity to see if they can be that match.
Leigh Ann Adam, the morning host of Star 102.1, found out about Hallie’s battle with Diamond Blackfan Anemia (DBA) about a month ago and has been working since then to organize a bone marrow swabbing drive. The drive will be held from 11 a.m. - 1 p.m. at Norma’s Cafe (17721 Dallas Parkway, Dallas) on Tuesday, July 11 in conjunction with the radio station and Hallie’s Heroes, the organization Hallie’s family founded.
Hallie, a Denton local, has been awaiting a bone marrow transplant for eight years. Such a transplant is the only cure for DBA, an extremely rare disorder wherein bone marrow doesn't produce red blood cells, affecting only about 800 children worldwide, says Jennifer Scott, who is on the board of Hallie’s Heroes. In addition to working to raise awareness and research funding for DBA, Hallie’s Heroes has been hosting and helping to coordinate swab drives since 2015.
With less than 2 percent of Americans on the bone marrow registry, Elyse Barnard, Hallie’s mother, founded the organization to help save her daughter’s life -- and Hallie herself wanted to help others suffering from DBA.
“Hallie kept saying, ‘Mama, we can do more, we have to do more. It’s not just me,’” Scott says. “This was at 6 years old, before Hallie's Heroes was even an official charity. Hallie gave a speech at [our first event] because she wanted to be the kid to speak for the kids who were too sick to speak for themselves.”
Adam was watching the local news about a month ago when she saw a short segment on Hallie’s Heroes. As a mother of three, Adam says she’s particularly affected by children’s stories. “I was like, ‘oh my gosh, we have got to find a match for this little girl,’” she says. “It just really touched me that her mom started Hallie's Heroes, and they have found so many different matches for other people, but none for Hallie.” She started researching Hallie that night, then hatched a plan with Star 102.1-FM, saying, “we’ve got to see if we can set something up for her.”
Radio personality Leigh Ann Adam will be swabbed, along with anyone else who goes to the event at Norma's Cafe. Need more motivation? There will be free pie.
Even if Hallie’s match isn’t found, Adam and Scott agree that educating people on the ease of getting swabbed and donating is paramount. Finding a match is like “winning the life lottery,” Scott says. When a match is made, the donor doesn’t even have to undergo surgery, and will walk out with a soreness that Scott equates to falling or getting the flu at worst.
When you get swabbed, even if you’re not an immediate match, you’ll be put onto the national registry, which means you may be able to save a life in the future. Scott urges anyone who can't make it to the drive tomorrow to visit DKMS.org to register for a swab kit and input Hallie’s Heroes as a referral.
Hallie is a “special ... exceptionally smart” girl, Adam says. She has a dog named Linus, and she wants to be a veterinarian when she grows up. (She's generous, too: She promised that when she grows up, Adam gets a discount at her vet's office.)
In many ways, Hallie is an ordinary 9 year old, minus the multiple speeches she’s given to crowds of 5,000-plus. But Scott says one of Hallie’s Heroes’ goals is to promote understanding of invisible illnesses.
“Just because you can’t see it from the outside doesn’t mean it’s not real,” she says. Hallie is currently on steroid treatment to manage her DBA, but she will eventually become resistant to those treatments. Without a bone marrow transplant, she’ll then have to get blood transfusions every three weeks.
Scott says, “That’s no way for anyone to live, let alone a 9-year-old girl.”