Sevierville teen with rare disorder granted NYC trip

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A Sevierville teen got a once in a lifetime adventure: a trip with his family to New York City. Thirteen-year-old Skyelar Effler suffers from a rare congenital disorder – one that can cause craniofacial, skeletal, cardiac and renal abnormalities.

It was all made possible thanks to a children’s charity called Kids Wish Network, which grants wishes for kids with life threatening illnesses.

Skyelar’s wish was granted last week. He’s now back in Sevierville after what he and his family are calling a fun and amazing trip.

Revealing the plans was almost as exciting as the trip itself. The surprise for Skyelar was unveiled at the Sevierville fire station.

“Do you realize that in the day after tomorrow we’re going to get on a plane and we’re flying to New York City and he just looked at me, and he goes, just grins really really big,” said his dad, Shane.

Skyelar’s favorite part? “Probably going to the New York Yankee stadium,” he said.

A visit complete with a private tour of the stadium and museum before heading to their seats for the game.

“I couldn’t believe it. It was amazing,” Skyelar said.

A dream come true – thanks to Kids Wish Network. The past 13 years of Skyelar’s life have been far from easy, battling a lifelong diagnosis of a rare, inherited congenital disorder called Simpson-Golabi-Behmel syndrome.

“If he made it past 8, then it would be more of a chance for him to survive, but they weren’t going to promise us that he would make it to 7 or 8,” said Shane.

And that’s why this New York City adventure means so much. It’s proof of the barriers the teen’s broken and the obstacles he’s overcome.

“They told us he’d never walk, but here we are walking through New York. And walking, I looked back over my fitbit and on one day we walked like 11 and a half miles,” Shane said.

“Not all kids at my age have fought, battled through all the stuff I’ve went through,” said Skyelar.

If you want to learn more about Kids Wish Network, click here (www.kidswishnetwork.org)

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