9-year-old Prospect boy shares difficult journey with Apert Syndrome

LOUISVILLE, Ky. (WDRB) -- Born with a rare condition that left his hands, feet and head deformed, a 9-year-old Prospect boy has always dealt with stares and whispers. 

It's a path Aiden Skees' family never expected to walk, but they're sharing their difficult journey because this little boy has an important lesson to teach us all. 

"I remember the room went completely silent after I delivered, and they placed Aiden on my chest and his face was a little scrunched but didn't alarm me at all," said Taryn Skees', Aiden's mom. "And then I heard my husband ask if his hands were okay, and I looked down. It was quite a shock."

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

Life became a blur with the Skees taking care of Aiden's medical needs and caring for their three other boys. 

A heartbreaking encounter with another couple helped Aiden's mom, Taryn Skees, realize that wasn't enough -- and a tough moment became a teachable one.

"We were at the Zoo, and there were two adults standing in line in front of us pointing and staring, and one jabbed the other and said, 'Look at that ugly baby,'" Taryn Skees recalled. "We were two feet away, and they didn't care that I could hear."

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

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

"Sad," Aiden replied. 

"What did you do when people made you feel bad?" Woolsey countered.

"Ignore them," Aiden said.

Now they don't wait to see how others react to Aiden's appearance. They reach out to schools and churches to share their story, letting people know it's okay to be curious, and more importantly to be kind.

"I think kids nowadays could use a little dose -- a reminder -- that kindness can go a long way," Taryn Skees said. "If your child does say something or gets caught staring, I always say at least smile -- if that's the least you can do."

Aiden is recovering from major surgery -- his 15th -- that is completely transforming his face. He's wearing a halo with 10 screws attached to his skull that's slowly moving the middle of his face forward. 

"With the turn of a screw, we have a little tool, and we turn it," said Taryn Skees. "0.5 millimeters with each turn, and we do it 2-3 times a day."

Besides realigning Aiden's face, it will open his airways to improve his breathing and speech. 

"I loved Aiden as he was as God made him when he was a baby, but with each skull surgery, it changed his appearance a bit, and you mourn that when it happens, but afterward it becomes like, well, this is the new Aiden and you don't even remember," Taryn Skees said.

There's one thing Aiden is most looking forward to when the device is finally removed -- and it's not his new appearance. 

"Eating!" Aiden said.

He's quick to answer what that first solid food will be.  

"Donuts!" he said.

"My goal is to just make sure that he grows up and feels loved and his family will always be there for him," Taryn Skees said. "But as a mama bear, I want to step out and help others understand how brave he is -- what he's been through -- and that he's an amazing kid, and just like every other kid."

Aiden will have the device removed from his head in mid-July, and we'll check back in with him to see how he's doing. 

He'll face additional skull surgeries down the road, as his skull expands as he grows.

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