Grace Haupt didn’t want to go to the Halloween party. At age 12, doing what you’re told isn’t always the first option. But she went—and when it was time to head home, Grace couldn’t have been happier that she’d done what her parents had asked. “I met a real, live geek tonight,” she said to her mother, beaming.
For someone interested in electronics and figuring out how things fit together, any chance encounter with a computer programmer can be big stuff. For someone trying to make sense of life and its nasty twists, unexpected doses of happiness can be quite therapeutic.
Grace has Friedreich’s Ataxia, a relentless, progressive neuromuscular disorder that inhibits a body’s ability to regulate its coordination and can trigger heart problems, diabetes and scoliosis. It’s caused by a genetic mutation that discourages the production of the protein frataxin, which helps cells create energy.
The long-term prognosis for Grace is not good, and experts around the world are devoting time and effort to finding a cure. “The problem is solvable, but time is of the essence,” says Holly Hedrick, Grace’s mother and a pediatric surgeon at the Children’s Hospital of Philadelphia.
A sixth-grader at Episcopal Academy who lives in Devon, Grace navigates her day with spirit and drive—not to mention a scooter that gets her to classes and other activities. She’s a gifted student who loves to write, and prefers reading and tinkering with electronics to TV and social media. Meanwhile, as the scientific community chases a cure, the EA community has rallied behind Grace—and her family cherishes each day with her. The result is a girl whose independence belies her physical condition.
“The thing that’s remarkable is that she just fits in,” says Stephen Morris, head of EA’s middle school. “She’s part of the crowd. Her spirit and ability to engage and ability to see herself like everybody else are remarkable things.”
They are, considering that Grace has been fighting FA since her days in pre-kindergarten, when a teacher mentioned to her parents that Grace “kept knocking people down when trying to get somewhere.” It led Hedrick and her husband, Hans Haupt, a cardiac surgeon at Phoenixville Hospital, to investigate possible inner-ear problems, brain issues, and anything else doctors felt were possible causes for her lack of body control.
In early December 2007, when Grace was in kindergarten, Hedrick received a call that confirmed what doctors and the family had suspected for almost a year. Grace had Friedreich’s Ataxia. The coordination problems she’d experienced were going to increase. She would soon need help getting around. “We told Grace, ‘This is what it is, it gets worse, and there are a lot of people in the laboratory working hard to make it better,’” Hedrick says.
When she was in third grade, Grace and her mother developed a presentation for her classmates that described FA and its effects. She wanted to answer all the questions at once. It’s a process she repeated this year, complete with visual aids, when 30 new students joined her class for middle school. It required much preparation, not to mention courage. “I was nervous before it, but once I got into it, it was kind of easy,” says Grace.
Talking to a bunch of 12-year-olds about a debilitating medical condition and describing why you’re different can be pretty daunting. Grace handled it all with characteristic aplomb. Afterward, she didn’t have to worry about answering any more questions—except whether her friends could take a ride on her scooter. “They can’t,” she says, smiling.
The same mandate applies to her 9-year-old brother, Henry, who’s always “volunteering” to fetch the scooter for her.
Once a year, Grace takes part in Ride Ataxia, a 10-mile bike trek that raises money to fight the disease. This past October, as part of Team Defying Gravity (named for a song in the play Wicked, a favorite of Grace’s sister, Lily), Grace completed the course using a recumbent catrike, a three-wheeled cycle she piloted like a professional. She was joined by classmates and other members of the Episcopal Academy community, including upper school history teacher Kris Aldridge. The Aldridge family is friendly with the Lins, whose daughter, Melanie, is close to Grace. Aldridge marvels over Grace’s spirit. “It’s an attitude, an appreciation of living in the moment,” says Aldridge, who’s taught at EA for 11 years. “As we hit middle age, you think, ‘What does my life mean? What contribution am I making to society? How much longer do I have to live?’ To put that on a sixth-grade kid is a lot.”
It is a lot. Grace knows that. To cope, she writes. When she was in fourth grade, she told her mom, “I like writing, because all the things I cannot do in the real world, I can do in my stories.”
Ask Grace what her favorite television shows or movies are, and she retreats a bit. “I don’t watch TV a lot,” she says.
But ask her about reading, and she snaps to it. The Book Thief is her current favorite. It’s set in Nazi Germany and is generally read by high school students. “My mom always told me that, when you read, it’s like you go to another world,” Grace says. “I would say that’s true.”
Grace works to be a part of EA in other ways. This winter, she’ll swim with the middle school team. During the fall, she spent time with each athletic squad and wrote about the players and coaches. It’s something she’ll do again in the spring. “I felt like part of the team,” she says.
Mostly, Grace feels like a normal sixth-grader. She’s just the one on the scooter. “I can’t say enough about how accepting and embracing the school has been,” says her mom.
Earlier in the year, the sixth grade did a team-building exercise in which groups constructed rafts out of PVC piping, bungee cords and pool noodles. Once the crafts were completed, the teams raced them across the pool. Each had four spot ters and a pilot. “Grace wanted to be a
spotter,” says Matt Newcomb, who teaches sixth-grade English. “She jumped in with both feet.”