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7-year-old won’t be slowed by bone marrow plight

Posted on 30 July 2015 by admin

By Deb Silverthorn

Photo: Barnard family More than $7,000 was raised for DBA, Diamond Blackfan Anemia, at the finish line of the Hallie’s Heroes 5K sponsored by 7-year-old Hallie Barnard’s Ryan Elementary.

If it’s not whether you win or lose, but how you play the game, then Hallie Barnard is the greatest of athletes.
The 7-year-old is looking to find a bone marrow match, and will speak at the opening ceremonies of the Dallas-hosted JCC Maccabi Games this Sunday.
“It’s so nice that people want to help me and I hope we find a match soon,” said Hallie, a piano-playing gymnast who loves to read and do arts and crafts. “Even if we don’t find a match for me, I think we could find a match for someone and there’s a lot of people who need one.”
Hallie Bea as she’s known, the daughter of Elyse and Jesse and big sister of Breece and Celia, was diagnosed as an infant, one of 800 children worldwide with Diamond-Blackfan Anemia, a rare condition where the bone marrow is unable to make sufficient red blood cells. Hallie, born three weeks early and at 5 pounds, was first thought to be petite like her mother. When she was 18 days old the family dog “screamed,” alerting Hallie’s parents to the fact that their “napping” baby girl was blue. At the hospital it was thought she might have acid reflux.
In her first year Hallie suffered many colds that lasted longer than considered normal, she was slow to gain weight, and she had trouble sleeping.
At her one-year well-check, she appeared anemic to her pediatrician. A series of blood tests changed the Barnards’ life in an instant.
A healthy red-blood-cell count would have been around 11-15. Hallie’s score was a 4. After many “could be” diagnoses and six weeks later, Hallie was diagnosed with DBA, and the medical trek from the family’s home in Virginia to Boston Children’s Hospital became routine. With only four hospitals in the United States specializing in this horrific disease, the family moved to Dallas in 2010, where Dr. Zora Rogers and her team at Children’s Health Dallas care for 21 DBA patients.
“We left our home, our family, our jobs to save Hallie’s life — there was no choice, we needed 24/7 expertise,” said Elyse, who cares for her children at home, while her husband, a former Marine who served in Iraq, works at a Target distribution center. In the last year the family was joined by Aunt Alisha (Myers), Jesse’s sister who moved to Dallas to follow a medical field career path, inspired by Hallie’s fight.
The Barnards soon connected in Dallas with the help of Elyse’s former college roommate Lindsey Lieberman, who worked at SMU along with Rabbi Heidi Coretz, director of Hillel of Dallas.
“I love Rabbi Heidi so much and she’s my friend,” said Hallie. “After one of my really big doctor visits, Rabbi Heidi and her daughter Hannah and me had sushi and frozen yogurt and we did art and had facials and we did our nails. She always smiles and I really, really love to be with her.”
“Overall, Hallie is a beautiful person inside and out, a wonderful daughter, big sister and friend. She inspires everyone who meets her and she is so humble. It doesn’t take much for her to jump for joy,” said Rabbi Coretz, also the rabbi at Shir Tikvah of Frisco, where the Barnards have found a home. “She appreciates every gift and experience and she loves her Judaism and her Temple family.”
Hallie, who is most appreciative of all who do the mitzvah of registering as a bone marrow donor, pays it forward on her own.
When she lost a tooth, she asked the tooth fairy for $1 for each of her siblings; for her birthday she wanted dog toys for animals needing to be adopted; and she has donated 10 inches of hair to Locks for Love. This child is a doer for others, in her own way, and she isn’t one to stop.
Not only does Rabbi Coretz empathize and serve as clergy for the family, she is a fervent supporter of the bone marrow registry, she herself called on twice as a perfect match (unable to donate due to privately held issues of the recipients).
“As Jews, our highest calling is to save a life and my life would be blessed tremendously if I could have this opportunity,” said Rabbi Coretz, who sang Shehechiyanu. Meanwhile, I help others register and I’m a regular platelet donor.”
In February of this year, four DBA patients died. “It took us weeks to ‘come out from under the covers,’” Elyse said. “We want to advocate for Hallie and her life while she’s well. The appreciation we have for the support from everyone can’t be underestimated!”
The Barnards have been supported by Debbie and Steve Vinson, owners of the Chick-fil-A in Hurst, who are hosting their fifth bone marrow drive (9:30 a.m.-2:30 p.m. July 30 at 460 Grapevine Hwy.) in Hallie’s honor.
In February the Vinsons hosted a Sing Away DBA Challenge, raising $1,000 to support research through the Diamond Blackfan Anemia Foundation, Inc.
In August, Hallie will start second grade at Ryan Elementary, and in May, her school sponsored a Hallie’s Heroes 5K run which had 216 runners raising over $7,000, also for the Diamond Blackfan Anemia Foundation, Inc.
“Hallie’s donor will likely share her Jewish heritage so it makes sense, during this exciting time that the Dallas community is hosting Maccabi, for us to raise awareness for those in our community who have a need,” said Amy Roseman, donor recruitment coordinator, Delete Blood Cancer DKMS, noting there is only one national registry and, once registered, prospective donors remain filed until they are 61 years of age.
“Only 2 percent of Americans are registered and it is my hope that the 2015 Maccabi games will provide community, strength and hospitality for the athletes as well as a donor and second chance at life for Hallie. Every parent would want the community to do the same for their child, and this is all about the essence of community!”
“Community is at the center of Maccabi from the first recruiting of our steering committee to the last farewell to our athletes and coaches from around the world. To help Hallie, and others in need of bone marrow transplants, is to live our Jewish value of hineini — I am here. We are all here and ready to help,” said Dafna Rubinstein, a Maccabi 2015 Housing co-chair who in 2012 became a bone marrow donor, 10 years after registering to do so. “As we welcome young athletes from around the world, to engage in spirit and sport, what better gift and way to make the world a better place than to help one of our own.”
Following the success of last summer’s ALS Ice Bucket Challenge — hoping to bring awareness, and fundraising, to their cause — Hallie’s Heroes started a Sing Away DBA challenge, featured on the Hallie’s Heroes Facebook page, open for all to like. There are many participants, including Hallie singing the Marine’s Hymn. Her own self-assigned fight song is Rachel Patten’s Fight Song, and she hopes to have new visitors to her page, and that all of her Hallie’s Heroes will visit her Facebook page to post their own challenges, photos of them swabbing and registering for deletebloodcancer.org, and to find out about related drives and events.
“I might only have one match, but I can make an explosion and all those things I didn’t say … ” are the lyrics from the Rachel Patten song. “This is my fight song, take back my life song, prove I’m alright song. … And I don’t really care if nobody else believes ‘Cause I’ve still got a lot of fight left in me.”
There’s a lot of fight left in the pixie body of Hallie Bea and all she needs to win her battle is a little pixie dust — in the form of a perfect match.
Prospective donors wanting to help Hallie, and any of the 14,000 prospective patients in need of a match, will be able to register, from 6:30 to 9:30 p.m., at SMU’s Moody Coliseum, where the ceremonies will be held. All prospective donors must first receive free Maccabi spectator or other credentials by signing up at dallasmaccabi.org.
The Hallie’s Heroes Bone Marrow Registry Drive will take place at SMU’s Moody Coliseum on Sunday, Aug. 2, from 6:30 to 9:30 p.m.
Prospective bone marrow donors must be in good general health and between the ages of 18-55. A free swabbing kit can also be ordered online at www.deletebloodcancer.org. For more information, call Amy Roseman at 646-530-2911.
All prospective donors for this event must first register online for Maccabi spectator or other credentials at dallasmaccabi.org.

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