Muskegon girl with cranial facial syndrome is making a difference
It's game night at the Cooper house and just like many families the older brother rubs it in when he's winning. "You owe me $400!” But teasing from 12-year-old Carson only goes so far, "I just worry that it could go wrong and she could like, be sad about something."
What big brother Carson really worries about is whether other people tease Avery. "When I was first at Reeths-Puffer some people were kind of pointing at me and I was in first grade."
Nine-year-old Avery Cooper was born with Pfeiffer Syndrome. A cranial facial abnormality that makes her look different than other kids, "At first people would ask me why my eyes look bigger and I said because my face it kind of like flat in the middle. And they didn't really say anything they just wanted to know why."
When Avery was little, her mom, Stephanie Cooper, says she and her husband had no reason to expect anything but a healthy baby.
"Every ultra-sound we had she had her face turned away from it she wasn't showing." But Stephanie said during delivery doctors immediately knew something was wrong.
"They said it looked like swelling."
Avery was brought to Helen De Vos Children's Hospital where she was diagnosed with Pfeiffer Syndrome.
Pfeiffer Syndrome is prevalent in about 1 out of 100,000 people. The genetic condition is not hereditary.
"Most cases of Pfeiffer Syndrome are new. Meaning it's a new genetic change and not something that's inherited from someone's parents." Dr. Caleb Bupp is a geneticist for Spectrum Health, he explains how Pfeiffer syndrome causes the bones in the head of newborns to fuse making it impossible for the brain to grow.
"Because the brain needs to grow inside you have to go in and open those areas and it has to happen time after time to allow the brain to grow and develop. And certainly, the face has a lot of important features in it so vision issues and hearing loss can be part of this as well."
Avery has had nearly 18 surgeries.
"You're in the hospital you're spending a couple weeks here sometimes. And then when you come home there's the recovery time." Stephanie said.
Avery's most recent surgery was a craniotomy. It's made a significant impact on her appearance. She now looks drastically different from just a few years ago, which makes Avery happy.
“I do like the way how I keep changing every time," said Avery. "Because I want to be normal like everybody else. So then nobody thinks I was different in the first place."
Part of Avery's attempt at being normal is to remove the stigma of Pfeiffer Syndrome.
"Some people just ask me questions about my face and stuff so then when I talk to them it helps them know why my face looks different."
Avery talks in front of school groups around Muskegon, on her Facebook page and even her YouTube channel, doing anything she can, to raise awareness and acceptance for being different.
Pfeiffer Syndrome has no effect on Avery's intelligence, in fact, this smart little girl just started a business with her brother Carson. Sewing and selling scarves and burp cloths for charity. They give the money to an animal shelter for dogs with facial deformations.
It's easy to see why Avery is anything but normal, she is extraordinary.
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