Charlie Nath, 11, 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.”
Changing the world one speech at a time
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. Read full post »