“I’ve really resonated with Taylor Swift’s music, because I feel like it represents the journey I’ve been on,” says 15-year-old Hallie Barnard. “She’s had so many different eras. And I’ve had my own eras.”
Swift, who’s wrapping up her record-shattering Eras Tour this weekend in California, delineates her timeline by album releases and celebrity boyfriends. Hallie partitions hers into periods of life-threatening illness, treatment, and recovery. But their paths, however dissimilar, have crossed twice. And the impact has rippled out to touch hundreds of lives through Barnard’s nonprofit, Hallie’s Heroes.
The most recent intersection happened this spring, when Hallie sat front-row center for one of Swift’s three concerts at NRG Park in Houston. An osteosarcoma survivor and left-leg amputee, Hallie spent the whole night dancing, jumping, and standing—a significant feat in itself, given that she only recently resumed walking after more than two years of immobility.
“I had a sign that said, ‘I survived cancer,’ because I had recently got back some scans that said I was cancer-free,” she says. Although she wasn’t able to get Swift’s attention, other band members saw the sign and reacted to it. “I got up and I was screaming,” Hallie laughs, “and they’d scream back and wave. It was just so amazing.”
She went home with some guitar picks from the sidemen, but without the one prize that would have brought the experience to a perfect finale: Swift’s autograph on her prosthesis.
“We had a sign that said, ‘Taylor, please sign my leg,’” laughs Hallie’s mom, Elyse Barnard. The device already bears inscriptions from performers such as Elle King, John Schneider, Marie Osmond, and Adassa (of Encanto fame). A Swift insignia would cement a bond that dates back more than five years when the singer left an indelible mark on Hallie’s life.
It happened in 2017, a long-ago era for both the performer and the fan. Swift was basking in the success of 1989 (named Album of the Year at the Grammys) and dealing with the usual avalanche of salacious gossip about her private life. Hallie, then nine years old, was battling an exceedingly rare (one in 200,000) genetic blood disorder known as Diamond-Blackfan anemia, or DBA. The only cure for DBA is a bone-marrow transplant, but the donor has to be an extremely close match—only about 1 percent of candidates are suitable for any given patient.
The Barnards launched a charity, Hallie’s Heroes, to help raise awareness about DBA and build up the donor registry. Their efforts got a huge boost from a YouTube video featuring Hallie dancing to Swift’s megahit “Shake it Off”—the biggest single off 1989, and the biggest-selling song of the singer’s career—alongside a bunch of Fort Worth police officers and firefighters.
“We all go through difficult things in life,” Hallie says. “But sometimes you just need to shake it off—forget about it for a little bit and have some fun. That’s why we picked that song. Not only were we shaking it off, we were having fun and raising awareness for so many children out there that don’t have a voice and need life-saving matches.”
“We had over 8,000 people sign up to be Hallie’s match because of that video,” says Elyse. “And through those donors, we were able to find more than 100 matches for other families.” Two of those donors were Forth Worth police officers who appeared in the video; a third was one of the dancing firefighters.
“Every time we found a match, it almost felt like I found my own match,” Hallie adds. “I was just so excited to be able to help other people, even though I might not have been helped by that specific donor.”
Her own match finally surfaced just after her 10th birthday, ending a nine-year quest. The recovery process was grueling, involving intense chemotherapy that suppressed Hallie’s immune system to diminish the odds of rejection. The treatment was successful—the transplant took, Hallie’s health markers improved, and the DBA era of her life came to an end.
Twenty days later, her osteosarcoma era began.
“People with Diamond-Blackfan anemia can get a lot of cancers, mostly sarcomas,” Hallie explains. “I got osteosarcoma, which is a bone cancer. If I didn’t have the transplant when I did, I would still have had DBA, and I would have not made it through the cancer. So the transplant not only saved me from the DBA, but made me strong enough to be able to fight cancer.”
The tumor arose in her left leg and grew so rapidly that limb-salvage efforts were abandoned fairly quickly. Hallie had rotationplasty at age 11 to remove the lower part of her leg, then endured a complicated journey of recovery and rehabilitation that prevented her from walking for more than two years. There was a lot to shake off during that particular era—wound vacs, debridements, endless hours of PT and OT, osteopenia, and so on. All this, plus a regular middle-school curriculum.
“Right after her amputation, Hallie used to stand with her walker and try to dance,” Elyse recalls. “Somebody would stand behind her to hold her up and help her move her body.” She managed to get through it all with grace. And when the lights went down on Swift’s concert in Houston, and the opening notes of “Shake It Off” blared out through the speakers, it felt like everything had come full circle. Hallie was dancing again, setting her cares aside, having fun, and losing herself in the music.
What does she imagine the next era of her life might look like?
“I might want to become an orthopedic surgeon and chop off legs,” she laughs. Throughout her medical odyssey, Hallie has bonded with doctors, nurses, and other clinicians who survived cancer, experienced limb loss, dealt with transplants and transfusions, and battled other conditions like hers. “It’s difficult not having somebody there who’s been in your position to help you through it. So I definitely want to be that for somebody.”
After Hallie was diagnosed with osteosarcoma, Hallie’s Heroes rewrote its by-laws so it could support families that are dealing with childhood cancer as well as DBA. You can donate or volunteer at the organization’s website. You can also follow Hallie’s Heroes on Instagram and Facebook.
And if anybody out there can help get Taylor Swift’s John Hancock inscribed on Hallie’s prosthetic leg, you’re a real hero.
