‘I’ve had stuff said to me that just hurts’ N.C. teen says rare medical disorder causes bullying

BELVIDERE, N.C. - Life hasn’t been easy for 13-year-old Emma Horton.

She was born a twin with a craniofacial disorder that causes her to look different. The rare medical disorder has caused her to have to undergo seven surgeries since she was born.

“She is my hero. She’s wonderful. She’s Christmas every single day,” said her mother, Patricia Horton.

Patricia wants other children and people to accept and understand her daughter’s disorder. The condition is rare and Emma also has other medical issues, including one that impacts her breathing. She’s spent most of her first two years in the hospital.

“It’s overwhelming. It’s scary. It’s a ton of emotions,” said Patricia.

September is Craniofacial Acceptance Month.

The same time of year that Emma is going back to school, which is where she said she has experienced bullying.

“I have girlfriends that love me, but kids are bullying me just to be mean,” said Emma. “I’ve had stuff thrown at me. I’ve had stuff said to me that just hurts.”

She said she’s experienced emotional and physical abuse in the past.

“They [bullies] will throw balls at the back my head. I’ve had a kid smack me in the back of my head with a magazine. I’ve had water bottles thrown at my butt,” said Emma.

Emma’s just like all the other kids in middle school. She likes math, photography, soccer and painting. She wants to be accepted despite her differences, and as thousands of kids head back to school she has a message for them.

“Whenever you see somebody like this, say hello. Don’t be afraid,” she said.

We reached out to the Perquimans County School District after our interview with Emma.

They said they were unaware of any issues of bullying and that they take it very seriously. Officials said they have set up a meeting to begin the next steps of support with Emma and her family and hope to use this as a teaching moment to help educate others about her disorder.

The school said, “Perquimans County Schools looks forward to partnering with Emma and her family as together we will strive to bring a greater awareness to Craniofacial Disorder and how it impacts student life at the middle school level."

Below is information from FACES: The National Craniofacial Association:

What issues do children with craniofacial disorders deal with?

Depending on their syndrome: speech problems, eating normally with defect in lips and mouth, hearing, swallowing, having a trache (tracheotomy) to breathe, inability to smile (facial paralysis).

Are a lot of children with the disorder bullied?

Yes, they can be, but a lot of parents are taking a neat approach to this by educating the students before their child starts school there. They do this in different ways, but one of the best I've seen is a letter introducing the child along with their craniofacial difference, explaining what their child was born with and what to expect and a plea for kindness and understanding. This is shared with the entire student body (as well as teachers). Click here for a great example a parent posted.

What should people in the community understand about craniofacial disorders?

That even though they look different, people with craniofacial differences are the same as you and me. Often a child with a craniofacial difference is considered to be mentally challenged because their head/face is affected. This is rarely the case. In some instances if they do not have the proper surgeries when they are young, their brain may be affected because fused skull bones (craniosynostosis) leave no room for the brain to grow.

It's important that we teach children and parents how to act and respond when they see someone who looks different. There's a great book for kids call "The Courage to Be Kind" by Jenny Levin and Rena Rosen that helps teach that.

Here are a few helpful links:

Click here for a great article on how children with craniofacial differences can handle bullying.

You can visit the FACES Facebook page by clicking here.