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Growing up with DBA: Hallie Barnard and her heroes

Growing up with DBA: Hallie Barnard and her heroes

February 18
02:15 2016

Growing up with DBA: Hallie Barnard and her heroes

Kyle Martin | Staff Writer

Hallie Barnard, a young, lively 7-year-old student at Denton’s W.S. Ryan Elementary school, loves to draw, play with her dogs and siblings and wants to be the first female president.

She is also anxiously awaiting a blood donor match for a bone marrow transplant. Hallie has a rare blood disorder called Diamond-Blackfan anemia, a condition in which the body lacks enough healthy red blood cells, leaving those affected more prone to sickness and cancer.

“There’s no rules in my room!” she shouted while jumping on the bed with 5-year-old brother Breece. “I’m gonna catch you!”

Hallie Barnard poses in a superhero costume. Andy Chao | Courtesy

Hallie Bea, as her friends and family know her, finds joy in public speaking and has delivered a multitude of speeches since discovering her condition. One took place at Southern Methodist University in front of thousands of compelled audience members. She has become a momentous advocate for her cause and even plans to be the first kid spokesperson for her organization.

At first glance, Hallie does not seem to be sick—she’s vibrant, energetic and ready to talk about anything, be it dolphins, Fort Worth Police officers, or playing piano—but after seven years of blood transfusions and steroids, her body will soon develop a tolerance to her medications.

The only known cure for a case like Hallie’s is a bone marrow transplant. Otherwise, as the family is well aware, the disorder is potentially fatal.

At the ripe age of 19 days old, Hallie had a run-in with death.

“My dog Rusty alerted my parents, and they came into the room, and I had my tongue sticking out and I was blue,” Hallie said.

That night in May 2008, at the family’s previous home in Virginia, Hallie’s parents laid their newborn daughter down to sleep and went to brush their teeth. Upon hearing a startling howl, something they had never heard before, they knew something was wrong.

Rushing into Hallie’s room, they found her already unconscious. Hallie’s mother Elyse said she dialed 9-1-1 while her husband Jesse administered CPR.

Rusty had saved the infant’s life.

Doctors usually diagnose DBA at birth or within the first three months of life, but they had failed to catch the disorder with Hallie. After months of worrying and Hallie’s health making no real progress, the family’s physician told them to check her into the University of Virginia Children’s Hospital. She needed special medical attention and blood work.

Doctors knew she had a health issue but wrongly diagnosed the child with Sudden Infant Death Syndrome and then acid reflux, among other things. They didn’t think to test her blood.

Her condition had gone misdiagnosed for a year.

“They didn’t know what to look for,” Elyse said. “Because it’s so rare, they had never seen it.”

The family arrived at UVA Children’s Hospital to a team of hematologists ready to conduct an emergency blood transfusion for the young girl. Hallie was the first case the Virginia hospital had ever seen, as the blood disorder is strangely uncommon.

According to international non-profit organization Delete Blood Cancer, 14,000 registered patients sit and wait for either a bone marrow or stem cell transplant to cure their blood disorder every year in the U.S. alone. Fewer than 800 of those patients have been diagnosed with DBA.

Nine-year-old Hallie Ballard hugs her Boxer Linus. She has a rare form of anemia called Diamond-Blackfan and is currently seeking a bone marrow transplant.Erica Wieting| Featur

Those diagnosed with this form of anemia are more prone to sickness andcancer due to a deficiency in red blood cell production, though the disorder itself is not a cancer.

A normal, active red blood cell count for any given person is anywhere from 11 to 15 or nine, according to the Children’s Oncology group. At a count of seven, the person requires a blood transfusion and at any number below that, the person is considered lethargic and could die.

At 12 months old, Hallie had a red blood cell count of four.

“The whole year that she had been alive, her [red] blood cells were low, but nobody knew,” Elyse said. “She was so used to functioning at such a low level, it didn’t alter her.”

The Barnards have since uprooted from Virginia to Texas to find refuge for Hallie in the Lone Star State’s expert medical care and have remained in Denton for three years. Hallie receives medical treatment from Dallas Children’s Hospital, where she is now one of 21 patients with DBA, rather than the only patient in Virginia.

Dallas Children’s is one of only four hospitals in the nation that treats DBA, with the other three located in Massachusetts, New York and California.

Because Elyse was in her third trimester with Breece at the time of the move, the family couldn’t fly to their new home. She was seven months pregnant when they made the drive from Virginia to Texas.

The family has now started their own 501(c)(3) non-profit organization, named Hallie’s Heroes for potential donors that will match with either Hallie or one of the other 14,000 registered patients in need of a bone marrow or stem cell transplant.

The group works in part with Delete Blood Cancer, searching for donors to match with hopeful recipients.

Angie Medlock, a software product manager and neighbor to the Barnards, serves as vice president of Hallie’s Heroes. To find out if a donor is a match for Hallie or another patient, there is only one way: swabbing the inside of their cheeks for DNA.

Medlock aids in organizing and swabbing potential donors among other duties within the group. She said they are looking to do two things: find matches not only for Hallie, but also any of the other thousands of pending recipients, and raise donations for research and awareness.

“We started really small and started getting the word out, advertising what we were doing,” Medlock said. “There was a sense of urgency about it.”

The group’s influence has since spread, along with Hallie’s story. UNT fraternity Phi Kappa Sigma, also known as the UNT Skulls, recently teamed up with the organization as part of a philanthropy project, and many of the fraternity’s members have swabbed and registered.

Hallie’s Heroes and the Skulls are also looking to organize “Swab Denton.” They plan to first swab those involved with Greek life at UNT, eventually expanding to the rest of the university’s students and faculty, Texas Woman’s University and, in turn, the rest of Denton.

On its Facebook page, Hallie’s Heroes has already started informing people about its upcoming 5K Fun Run. It will begin at 9 a.m. Saturday, April 2 at W.S. Ryan Elementary, with registration and packet pickup beginning at 7:30 a.m. Participants can register online for the event, where volunteers will be swabbing and registering donors all day.

People can also donate to the DBA Foundation or join the donor registry.

Amy Roseman, spokesperson for Hallie’s Heroes and donor recruitment coordinator for Delete Blood Cancer Dallas, said she hopes many people will register as donors and understand the impact they could have on another life. They want to swab as many people as possible to get an especially diverse sample of the general population in the registry.

Anybody could match with Hallie or another person regardless of nationality, age or gender.

“There is something we can all do to help,” Roseman said. “This is a numbers game.”

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