Hallie’s Heroes still swabbing, still waiting

Hallie’s Heroes still swabbing, still waiting

Hallie’s Heroes still swabbing, still waiting
September 08
14:33 2016

The story of eight-year-old Hallie Barnard and Hallie’s Heroes continues. Now, at 8 years old, “Hallie Bea” will be making more speeches and attending more “swab drives” all while making her way through the third-grade at W.S. Ryan Elementary. Life doesn’t slow down for Hallie Bea or her Heroes, and so they swab.

Hallie has a rare blood disorder called Diamond-Blackfan anemia, which means her body produces less red blood cells than a typical 8-year-old’s. Because of this, Hallie is more prone to illnesses and cancer.

After being diagnosed with DBA, Hallie made it her goal to help others, like herself, push through. Even after seven years of blood transfusions, medications and steroids, Hallie has made steps that have surpassed many elementary school children’s ambitions at such a young age.

“I go out and do speeches–nice speeches,” Hallie said. “ Speeches that make you want to go out and swab.”

Hallie loves talking to people so much that she created Hallie’s Heroes, an organization that looks to find bone marrow or stem cell matches for the more than 14,000 patients diagnosed with DBA. Since Hallie’s Heroes conception as a nonprofit in July 2015, they have conducted 80 swab drives, where potential candidates swab the inside of their cheeks to find potential matches, and registered over 2,200 possible matches to the international database for bone marrow and stem cell donors.

Working in tandem with the non-profit organization DKMS, which looks to find matches for patients with DMA, Hallie’s Heroes works day and night to register and swab as many people into the database as possible. So far, Hallie’s Heroes’ efforts have led to eight matches in the span of one year.

Hallie Barnard shows off her skills on the piano in her home.

Hallie Barnard shows off her skills on the piano in her home. Hannah Breland

Hallie, who has a passion for public speaking, gives speeches to college campuses, in coffee shops and in front of community members, all the while representing Hallie’s Heroes and DKMS. After being diagnosed with DBA when she was just an infant, she has become an unofficial kid-spokesperson for her cause, spreading her story as far as she can. She has spoken to audiences as vast as 5,000 people and as intimate as her family in their home.

“I go to bars and I’m not even 16 [years-old],” Hallie said, jokingly referring to a Hallie’s Heroes swab drive at Oak Street Draft House she spoke and swabbed at.

Her mother, Elyse Barnard stands by her side, encouraging her every move. After starting up the nonprofit for her daughter, Elyse and her family’s lives have revolved around education and activism on the matter of DBA since her child fell ill just a few weeks after birth. Her plan of attack to find a her daughter a match is simple: swab as many people as possible.

The fight against DBA is a numbers game. A donor can only be cleared to donate bone marrow or stem cells if they are a DNA match with the recipient. Otherwise, the recipient’s body will reject the donation and could cause harm instead of help the patient.

“[Hallie’s Heroes] has gotten a lot bigger,” Elyse said. “More so than we could have ever dreamed.”

Elyse spreads her wings across the community, reaching out to locals in the Denton area to spread Hallie’s message. She and the organization plan advocacy events and swab drives to add more names to their ever growing list of donors. Hallie’s Heroes recently teamed up with UNT Greek life and in part with UNT fraternity Phi Kappa Sigma to host a 5K Fun Run at W.S. Ryan Elementary. Their community reach keeps growing, which means a bigger possibility to find more matches.

Her cause is reaching far beyond Denton, however. A year ago, Hallie had met with a group of Fort Worth Police officers, who she calls her “Z Team,” to host a swab drive. This year, they met again for their one year anniversary. Hallie and around 18 other kids were inducted as “honorary Fort Worth Police officers” and were given their own officer shirts and badges. Hallie said they were able to “bust a bad guy” in a playful arrest enactment.

Because finding a match depends on finding donors, Hallie’s Heroes has many events and drives planned to get as many people in the community as they can involved in their race for a cure.

“It kind of ebbs and flows, but in October we have got a lot of events going on,” Angie Medlock said, vice president of Hallie’s Heroes. “We’ll be busy almost every weekend in October.”

Medlock said that Hallie’s Heroes fundraises for their cause to help alleviate financial burdens on their partner, DKMS, who pays for their swab kits. Swab kits cost around $65 each to process, and when over 2,200 individuals get swabbed, costs add up.

“It’s a significant cost, but it’s obviously very worthwhile,” Medlock said. “It’s a pretty minimum cost to save eight lives, if you think about it.”

Hallie, Elyse and Hallie’s Heroes have a lot planned for the rest of 2016 and moving forward. They won’t stop swabbing and asking for donations until they have found their matches and a cure. With over 14,000 patient’s names waiting in the DKMS database for a match, there is still a lot of work to be done.

Fundraising events and swab drives are the main weapons at their disposal. To stay up to day on Hallie’s journey and to see when upcoming events are happening, like their Facebook page and follow their website.

“Even if you only give five dollars, that’s five dollars more than we had walking into the event,” Elyse said. “You’re just giving time to somebody for a future.”

Featured Photo: Hallie Barnard poses for a picture with her dog Linus outside of her home in Denton. Hannah Breland

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Kyle Martin

Kyle Martin

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1 Comment

  1. JS
    JS September 13, 14:20

    Thank you for this amazing story. A few point of correction: DBA is rare. Less than 800 children are diagnosed with DBA in the United States. There are about 14,000 patients waiting to find a bone marrow match for a multitude of reasons, all life threatening in some way.

    DKMS, which looks to find matches for patients with all types of blood cancer, bone marrow and blood disorders.

    Thank you again. Hallie’s Heroes appreciates your support!

    Reply to this comment

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