UPDATE | 9-year-old with Apert syndrome transformed after halo device removed

LOUISVILLE, Ky. (WDRB) -- He's only 9 years old, but a Prospect boy with a rare disease has already endured more than most of us do in a lifetime.

Aiden Skees was born with Apert Syndrome, a genetic defect affecting only about 50 children in the U.S. each year. The bones in the skull, face and hands are fused together, preventing normal growth and impacting the shape of the head and face.

"It was quite a shock," said Taryn Skees, Aiden's mom.

Aiden has spent his life dealing with whispers and stares. 

"I had hard times when people would laugh at me," he said.

"How did that make you feel?" asked WDRB's Elizabeth Woolsey.


His fifteenth surgery in May was designed to change that. Aiden spent two months wearing a halo attached to his skull with screws to pull the middle of his face forward, improving his airways and oxygen flow and also normalizing his appearance.

After eight weeks, doctors have just removed the device.

Taryn Skees said the change to her son has been, "absolutely life-changing, completely different."

"When I looked in the mirror, I felt really good," Aiden said. "I've noticed that people don't laugh at me. They would point and laugh at me before I had the surgery."

"I'm glad that not as many people bully him because I don't like it," said Ethan Skees, Aiden's brother.

It's a big difference, but it was a long road to get there that made everything difficult, from playing with his brothers, to things we all take for granted every day.

"It was hard because I couldn't eat hard food," Aiden said. "It was hard to sleep because the nails were, like, pushed in my head a little bit. But now that I have this thing off, I can sleep normally."

"The change in his appearance ... it's less important to me that he looks normal because we loved him just the way he was before," said Taryn Skees.

In fact, it was his family's mission to help others understand that too by sharing their story at schools and churches. 

"I hope he continues to understand what's important: that his physical appearance and anyone's physical appearance shouldn't be a judge of character," she added. "What really matters is kindness -- and that we're teaching him to be a good person, and that he understands that his story and hardships have inspired so many other people."

"I feel glad that I had the surgery, and helping people," Aiden added.

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