Funds raised at the virtual event benefit MD Anderson research, prevention, education and patient programs
Fall 2020 : 12-year-old osteosarcoma patient supports cancer research, spreads hope
12-year-old osteosarcoma patient supports cancer research, spreads hope
"You can get through it. You can do anything you want to do," says Hallie Barnard.
Hallie Barnard. Photo courtesy of Jessica Novak Photography
"Learning to greet life with a positive attitude and discovering happiness in any situation,” says Valerae Lewis, M.D., chair of Orthopaedic Oncology at MD Anderson, when describing her patient Hallie Barnard. One would never guess that Hallie has spent the greater part of her life in and out of the hospital. According to the 12-year-old, the best is yet to come.
Hallie was born with Diamond-Blackfan anemia (DBA), a rare blood disorder that occurs when bone marrow fails to make red blood cells, though she wasn’t diagnosed until she was 13 months old. The only cure for this disease: a bone marrow transplant. Patients can spend years waiting for the right match.
Hallie is a real-life hero, but her mom, Elyse Barnard, says she’s also just a regular kid. Hallie loves using her cellphone, swimming, crafting and watching “Saturday Night Live.” Unlike most 12-yearolds, though, she’s helped more than 150 people find their bone marrow match by actively recruiting bone marrow donors.
Hallie and her family founded Hallie’s Heroes Foundation when she was just 6 as a way to help other children waiting for their bone marrow match. The Barnards partnered with local police officers, firefighters and other groups to recruit bone marrow donors. Thanks to their work, more than 8,000 people have added their names to the bone marrow registry.
Hallie found her perfect match at age 9. One month after learning her bone marrow transplant was a success, however, Hallie began experiencing pain in her left leg. This led to more doctor appointments and ultimately a diagnosis of osteosarcoma, a type of cancer that begins in the cells that form bones, in her thigh. Hallie and her family learned that the leg would need to be amputated. She decided she was not going to let a cancer diagnosis stop her, and that’s when her family decided to turn to MD Anderson doctors for her treatment.
“Hallie is an incredible young lady,” says Lewis. “Despite the obstacles that the world has placed in front of her, she is positive and always ready with a smile.”
The gold painted into Hallie Barnard’s scars represents a tradition known as Kintsugi, the ancient Japanese art of repairing breaks in pottery. Photo courtesy of Jessica Novak Photography
Evolving Mission
Hallie spent 44 days at MD Anderson recovering from her surgery. Not one to sit still for long, Hallie, along with her mom, would roam the halls at MD Anderson Children’s Cancer Hospital. On one of their trips they discovered the “bubble wall,” featuring oval plaques bearing the names of generous donors who have supported the hospital and its mission over the years. Elyse wanted to see her daughter’s name on that wall one day.
“There have been too many times to count that we have looked at Hallie, realizing that we could lose her very easily,” she says. “We don’t want this to be the end of Hallie’s story. So my husband and I decided that we would do something for these kids who are so sick.”
She and Hallie wondered if they might be able to use funds raised by Hallie’s Heroes Foundation to help other families with their hospital bills. They expanded the foundation’s mission beyond DBA to include that aim, as well as support for children’s cancer research.
“Our mission has grown as Hallie has grown,” says Elyse.
Mother and daughter got to work with the new mission in mind.
In the near future, Hallie’s Heroes Foundation will have a plaque on the wall — just as hoped. The foundation recently pledged $50,000 over five years in support of Lewis and her research in the area of pediatric sarcoma. It’s a rare disease, which can make funding difficult to obtain.
“Philanthropic support is incredibly valuable,” says Lewis, who plans to use the donation for basic science investigating novel therapies, as well as for work to improve outcomes for patients with pediatric sarcoma.
Today, Hallie’s MD Anderson care team continues to monitor her, but she’s optimistic about her future. She wants to be a surgical oncologist.
“Ever since I was really little, I’ve always carried around a book on the human body, and my nurses and doctors would read it to me,” says Hallie. “I have a new one now, and it’s my ‘yearbook’ that every doctor and nurse who works with me gets to sign. When I go to college, I’ll be able to look back on it.”
Hallie has a message for other kids coping with cancer: “You can get through it. You can do anything you want to do.”
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