US/World

Sarah Atwell, 17-Year-Old With Neurofibromatosis, Opens Up About Filming Discovery’s “Girl With Half A Face”

32687_002
Sarah Atwell has had more than half a dozen surgeries to reduce the size of her facial tumor, which results from a condition known as neurofibromatosis. Discovery Fit & Health

Sarah Atwell, 17, has been called just about every name in the book: fat, ugly, slut, fat face. The painful list continues. And all because of her condition, known as neurofibromatosis, which causes her cheek and eye to enlarge and droop. As the subject of Discovery Fit & Health’s upcoming documentary, the Windsor, Canada local can now add another name to the list: the girl with half a face.

“I don’t like the name at all,” Atwell said. “It feels like it’s offensive,” but the network thought it would be an attention-grabber. Atwell, who was diagnosed with neurofibromatosis when she was only eight months old, said the condition runs in her family, as is often the case. Her mother, Tara MacAskill, also carries the disorder, manifested as smaller tumors on her back. MacAskill’s oldest son also received a diagnosis, yet Atwell’s case is far and away more severe than either of them.

One In 3,000

Neurofibromatosis is actually a misnomer. Individuals can suffer from multiple neurofibromatoses, including type 1 and type 2 (referred to as NF1 and NF2), and Schwannomatosis. Each bears different characteristics, depending on where the tumors grow, what kind of tumors are growing, and how they grow. Atwell has NF1, marked by a tumor embedded in the nerves on the right side of her face. In the U.S. it affects approximately one in 3,000 children. While the tumor is benign, the pressure on her face and eye can cause painful headaches and blurred vision. The emotional pain, however, is often far more excruciating.

Last year Atwell released a homemade video detailing her struggle with neurofibromatosis. Seated in front of a camera, she methodically unveiled, on handwritten index cards one after another, the story of living with NF1.

“A lot of people think I’m always happy. The truth is…I’m not,” she explained, set to the soundtrack of her favorite song, Mark Wills’ “Don’t Laugh At Me.” “It all started in grade 5. I’ve been bullied for 6 years. All because of how I look.”

Out in public, people will point and call her names, she says. Parents will tell their children to avert their eyes. They’ll call her ugly, outright. The bullying has persisted since she was 10 years old, when someone first spit venom at her: Don’t go near her, you’ll catch her disease, they said.

“I was always pretty upset,” Atwell told the Herald News, Nova Scotia’s largest newspaper. “Usually, I’d talk to Mom, but once I hit middle school, I’d just come home and lock myself in my room. I would tell Mom, ‘It don’t matter, it don’t matter,’ ’cause she was always trying to find out what’s wrong."

These days, the high school senior does her best to let negative comments roll off her back. When something nasty manages to creep its way in, her support system of friends and family draws it back out, reminding her that the best thing to do is just to walk away. “My buddies are good friends,” she said.

Atwell concedes she didn’t see her friends much this summer. That’s when the camera crews for her upcoming documentary were following her every move, from roughly eight or nine each morning to seven or eight at night. The experience with the cameras was “horrifying,” she said, “because the cameras are in your face twenty-four seven.” She often grew weary of having to repeat things, redo takes, and calm herself down just to get the shot. She would walk up and down her high school’s staircase over and over because she was either walking too fast or too slow. She would speak too fast, and then turn “grumpy” and “be in a mood,” so they’d have to reshoot again.

But Atwell is happy she did the show. She wants people to better understand neurofibromatosis, particularly because, as she says, “I don’t know a lot about it myself.” Much of the information she has received about NF1 has been delivered through the parental grapevine.

What she does know is that surgery is no longer scary, but a routine procedure. She undergoes an annual surgery to have further portions of her tumor removed. Since she was eight, she’s had eight surgeries – four to reduce the swelling on her cheek and four to correct the shape of her right eye. The success of her latest surgery is still a mystery, a closely guarded detail that her Discovery publicity coordinator, Jordyn Linsk, said Atwell couldn’t disclose.

“In terms of actual details we probably want to be a little more ambiguous about it so people get to see it when they watch the episode,” Linsk said of Atwell’s physical transformation. “We want people to tune in.”

Year By Year

What Atwell could reveal was that she is still due for another surgery next summer. Doctors weren’t able to completely remove the tumor, but have made considerable progress in reducing its size. Atwell must wait between six months and year to allow for the healing process; if doctors remove too much at once, she risks losing a dangerous amount of blood.

In the meantime, Atwell will continue living her normal 17-year-old life: hanging out with friends, preparing to graduate high school, and working with kids, whom she says provide a refreshing innocence after long days of feeling like an outsider.

“I just have a passion with kids, and when I work with them, if I have a bad day everything is okay in the end,” she said, adding that even after she tells them about her condition, they still show her unconditional love. “They’re always so happy.”

Atwell hopes the new documentary, despite its jarring title, will encourage people who have been bullied to stand up for themselves, to tell somebody when they’ve been victimized, and to realize that things will get better. One day she hopes to work in a daycare, so that she can continue her passion of working with kids, perhaps even with those who share her condition. According to Atwell, it’d be a fitting relationship.

“I think it would be pretty easy, because I could help them through,” she said. “I know what they’re going through and would be able to help them.”

Loading...