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Meet Charlie

July is National Craniofacial Awareness Month.

Charlie Nath, 14, is many things. He’s funny. He’s smart. He’s articulate. He’s courageous. He’s a surfer. He’s a snowboarder. He’s a drummer. What he’s not, is defined by his rare genetic condition: Crouzon syndrome. He says he wants the world to know, “It’s what’s on the inside that matters the most.”

Crouzon syndrome is estimated to occur in about one of every 62,500 people. It affects each person differently and the severity varies widely. The condition occurs when there is an abnormal fusion of the facial bones and skull, which affects the shape of the head and the appearance of the face. For Charlie, his eyes are set wider apart than normal, he has prominent eyes and his upper and lower jaws don’t align properly.

“Charlie has a mild case of Crouzon syndrome,” said Dr. Michael Cunningham, division chief of Craniofacial Medicine at Seattle Children’s and medical director of Seattle Children’s Craniofacial Center. “There is a tremendous difference in the severity of the condition and how if affects each child. Some kids need surgery in the first few weeks of life, while others may not even notice they have Crouzon syndrome. Virtually all the children we see with Crouzon syndrome are cognitively normal.”

For years, Charlie was teased by his peers because of his appearance. He has memories of children staring at him on the playground, whispering behind his back and recounts of a time a student at his school told him he looked “creepy.” Knowing firsthand the impact of bullying, his mission this past year has been to give a voice to those who have been affected by bullying and to share his personal story to raise awareness.

“I have been teased a lot throughout my life,” said Charlie. “There are many other people around the world who are judged by how they look on the outside. I wanted to make a difference and effect a change.”

When he was in elementary school, Charlie decided to start by educating his peers about Crouzon syndrome by personally speaking to every class in his school. He hopes that in understanding the condition, his peers will be able to see past it, to who he really is as a person. Below is his powerful speech. You can read Charlie’s full story here.

 

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