“My nanny always told us when we were sad to cheer us up, ‘be strong, no matter what happens,'” This is what was taught to a teenage girl, Sarah Atwell, who lives with her family in Nova Scotia. She was born with neurofibromatosis, which caused a massive tumor to grow on the side of her face.
Now, the story of her psychological and physical transformation, “The Girl With Half a Face,” will air on Discovery Fit & Health, chronicling the weeks leading up to her successful surgery to remove the tumor. According to the Mayo Clinic, neurofibromatosis is a genetic disorder that disturbs cell growth in the nervous system, causing tumors to form on nerve tissue. The tumors are usually benign but can sometimes become cancerous. Symptoms are often mild, but can include hearing loss, learning impairment and cardiovascular complications because of nerve compression caused by the tumors.
Atwell, like most with the disease, was diagnosed in early childhood at 8 months old. Since then, she has had headaches and blurred vision and eight different facial surgeries. But the biggest obstacle in her way had been facing the bullies at school.
“Sarah never noticed she was different – she always thought she was the same as the other kids,” said her mother, Tara Atwell. “They didn’t understand it was a tumor and thought it was some kind of horrible disease they could catch.”
“I was in grade three and people were calling me names like ‘fat face’ and ‘ugly’ and were pushing me around,” said Sarah. “They said I had a disease. Most of the time, I just walked away and didn’t say much to them.”
But when she was 16, Sarah fought back, posting a YouTube video holding the sign: “Maybe one day the bullying will stop.”
“I was tired of being bullied and I put in on Facebook,” she said.
Soon, the Discovery Channel ran across the compelling YouTube post and offered to make a TV documentary on Sarah’s disorder. Many surgeons had refused to operate on her tumor because of its complexity, but her plight caught the attention of the medical community.
Sarah had three surgeries in 2010 and a risky one to remove most of the tumor last year. Now that surgery is complete, and today, she is a senior in high school and helps out as a teacher’s assistant. Sarah is excited about her future.
“If I could stand up to bullying, and if another kid who was bullied sees me and thinks they can talk to someone and think, ‘I can stand up for myself,’ then I have helped,” said Sarah.