Family spotlights rare disease

Most parents of a 6-year-old don’t regularly think about their child’s bone marrow. But Denton resident Elyse Barnard constantly has her daughter’s bone marrow on her mind.

At 13 months old, Hallie Barnard was diagnosed with Diamond Blackfan anemia, or DBA, a rare blood disease that prevents bone marrow from producing red blood cells.

DBA can be maintained with blood transfusions and steroid treatments, but the only cure is a complete bone marrow transplant from an identical marrow match.

Barnard and her husband are not matches for Hallie and their other two children are perfect matches for each other, but not Hallie.

“The worst feeling for a parent is not being able to make them better,” Barnard said.

Since Hallie’s diagnosis, Barnard and her husband have seen their daughter endure numerous blood transfusions and regular hospital visits while patiently waiting for a marrow match.

“She’s really mature for her age because she’s had to be,” Barnard said.

Fewer than 35 new cases of DBA are identified each year in the U.S, according to the Diamond Blackfan Anemia Foundation.

With such a low number of affected people, Barnard said the foundation gets little exposure and even fewer financial donations needed for research and resources.

Barnard is working to raise awareness and encourage people to join bone marrow registries so Hallie and children like her have a better chance of finding the match they need.

“It’s a process, but we have some great people that are willing to help,” she said.

Barnard is hosting a community call to action at 7 p.m. March, 26th at St. Andrew Presbyterian Church, 300 W. Oak St. Information on how to join the national bone marrow registry will be provided.

On Friday, March 27th Chick-fil-A at 460 Grapevine Highway in Hurst will donate 20 percent of sales made between 4 and 9 p.m. to the foundation in honor of Hallie.

The restaurant is also hosting karaoke at the same time as part of the foundation’s “Sing Away DBA” fundraising campaign. Marrow registry Be the Match will be on site offering cheek swabs for people looking to join.

The owners of the Hurst Chick-fil-A have been hosting blood and marrow drives in Hallie’s honor for the past four years.

The Barnard family met the restaurant owners when they moved to Fort Worth five years ago from Virginia for Hallie to be treated at Children’s Medical Center of Dallas, one of four hospitals in the country that specialize in DBA treatment.

The family relocated to Denton two years ago and Barnard wants to host similar events locally. She created the Hallie’s Heroes Facebook page in February to get the community involved.

“We’re hoping this will spawn more events up here,” she said.

Hallie is a student at Ryan Elementary School and school faculty and students help however they can. Librarian Desiree Peden is organizing a Hallie’s Heroes fun run on May 9 in Denton.

Peden said the run will be an opportunity to sign people up for marrow registries and to rally the community around Hallie’s cause.

“It’s very important to me,” Peden said. “She’s a really special kiddo.”

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