Ohio girl doesn’t let craniofacial disorder control her life

Credit: DaytonDailyNews

Macy Acord has suffered from Goldenhar Syndrome since birth but she and her mom want people to know that she’s just like every other teenage girl.

Goldenhar Syndrome is is a craniofacial disorder, a rare congenital condition characterized by abnormal development of the eyes, ears and spine, according to Dayton Children’s hospital. It can cause facial differences in people who have the disorder.

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“From the very beginning, I’ve told Macy that she’s not different from anyone else,” said her mom Kelly Martin. “And, she doesn’t feel different because she’s not.”

Macy, 14, of Chillicothe goes to Dayton Children’s hospital for treatment. She refuses to let her disease control her and to prove it has taken up horseback riding and enjoys some red velvet cheesecake at The Cheesecake Factory every time she’s in town, her mom said.

Her condition is the subject of a movie called “Wonder” that debuts in theaters on Friday. The movie, which stars Julia Roberts and Owen Wilson, is based on a book about a boy with Treacher Collins syndrome, a craniofacial disorder similar to Macy’s.

Since the disorder can cause some facial differences, it’s common for people who don’t understand to be taken aback a bit, said Christopher Gordon, medical director of plastic surgery at Dayton Children’s. Gordon has been Macy’s doctor for around 10 years.

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“It’s something that can be kind of frightening to other kids,” Gordon said.

Martin said her daughter has dealt with he full gamut of reactions to her condition while sometimes they “get angry or say mean things back” they’ve gotten good at just blocking people’s reactions out, she said. In light of the disorder getting more public attention because of the movie, Martin said she hopes that adults will teach kids that people like Macy really are just like everyone else.

“Macy is amazing and just super popular, a good kid and just goes about her business, you know, and deals with the medical problems,” Gordon said.

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