Sarah Atwell has neurofibromatosis, which is the same condition that afflicted the “Elephant Man”, Joseph Merrick, at the end of the nineteenth century.
Her condition is considerably less severe and has manifested itself as a large tumor which affects about half her face.
A documentary about its psychological and physical effect upon her, “The Girl With Half a Face,” will be screened on Discovery Fit & Health on Dec. 18 at 10 p.m. (ET/PT). It will follow the weeks leading up to her successful surgery to remove the tumor.
Neurofibromatosis is a genetic disorder that disturbs cell growth in the nervous system, causing tumors to form on nerve tissue. These tumors can develop anywhere, including the brain, spinal cord and nerves.
Sarah Atwell was diagnosed with the condition when she was less than a year old. Subsequently, she has had eight different facial surgeries, but her biggest problem was facing up to the bullying she received at school.
Sarah said, “I was in grade three and people were calling me names like ‘fat face’ and ‘ugly’ and were pushing me around… They said I had a disease. Most of the time, I just walked away and didn’t say much to them.”
“Sarah never noticed she was different — she always thought she was the same as the other kids,” said her mother, Tara Atwell, 44, who also has a milder form of the inheritable disease. “They didn’t understand it was a tumor and thought it was some kind of horrible disease they could catch.”
But at age 16, Sarah responded by posting a YouTube video holding the sign: “Maybe one day the bullying will stop.” She said, “I was tired of being bullied and I put in on Facebook,”
The Discovery Channel saw her YouTube posting and offered to make a TV documentary about Sarah Atwell’s problem.
Sarah had three operations in 2010, and final one to remove most of the tumor last year. Sarah said, “It’s pretty awesome. I am pretty sure most of it is gone except a little bit around the eyes. The doctor said he could not be sure if it would come back or not.”
Sarah,18, is now able to plan her future, “Hopefully,” she said, “I will be working with kids.”
“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.
And what does she say to others who may face bullying? Her advice is the same as her former nanny’s advice to her: “Stand strong and don’t let things get to you. Walk away and don’t let them bug you.”
One can only admire Sarah Atwell’s courage and strength, and reflect that the world has advanced somewhat since the days when Joseph Merrick, the Elephant Man, could only see his future as a freak to be exhibited in a circus.