When Taylor Swift came to Houston during her recently concluded Eras Tour, 15-year-old Hallie Barnard managed to score front-row seats.
“I’ve really resonated with Taylor Swift’s music, because I feel like it represents the journey I’ve been on,” says Barnard. “She’s had so many different eras. And I’ve had my own eras.”
An osteosarcoma survivor and left-leg amputee, Barnard 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. She held a “Taylor, please sign my leg” sign aloft during the show, and although she wasn’t able to get Swift’s autograph on her prosthesis, some of the band members saw the sign and sent Barnard home with guitar picks and other souvenirs.
The experience reinforced a bond that dates back to an earlier era in Barnard’s life, when she was battling an exceedingly rare 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.
To help raise awareness about DBA and build up the donor registry, the Barnard family launched a charity called Hallie’s Heroes. Their efforts got a huge boost in 2017 from a YouTube video that featured young Hallie (then nine years old) dancing to Swift’s megahit “Shake it Off” alongside a group of police officers and firefighters.
“We all go through difficult things in life,” Barnard 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.”
More than 8,000 people joined the DBA registry because of that video, and more than 100 of those new donors ended up being matches for other patients. “Every time we found another match, it almost felt like I found my own match,” Barnard says. “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 bone-marrow donor finally surfaced just after Barnard’s tenth birthday. The recovery process was grueling, involving intense chemotherapy that suppressed her immune system to diminish the odds of rejection. The treatment was successful, and the DBA era of her life came to an end after she turned 11.
Twenty days later, her osteosarcoma era began.
DBA survivors tend to be susceptible to cancers because of the immunosuppressants involved in their treatment. Barnard’s tumor was so aggressive that doctors couldn’t give her a break to recover from the harsh DBA chemo. She underwent a rotationplasty procedure, removing 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.
Barnard 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. Barnard 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. “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.”