Yukon Boy Battles Rare Form Of Muscular Dystrophy

A Yukon family is shaken after learning their active teenage boy is battling one of the rarest forms of Muscular Dystrophy. The teen used to be a standout athlete, but now, he can barely stand up.

Scotty Wooten has one of the only known cases of FSHD Muscular Dystrophy in Oklahoma. It weakens muscles in his face, arms and shoulder blades and has dramatically changed his life.

Like any other 16-year-old boy, Scotty loves to play video games, but in the last two years, since he was diagnosed with the very rare Facioscapulohumeral Muscular Dystrophy, Scotty is forced to sit out.

"I missed out on a lot of gym classes, which were pretty fun, because you usually get to play dodge ball," Scotty said.

Scotty moves slower, gets tired faster, had to transfer to Yukon Alternative High School and can no longer play on a sports team like he used to.

"Really liked sports, mostly baseball, enjoyed playing catcher," Scotty said.

Scotty’s mother says it hurts to watch her son battle the disease.

"Physically, I’ve seen a lot of changes," explained Emily Wooten, Scotty's mother. "Scotty doesn't walk flatfooted like a normal person any longer. He walks on his tiptoes to keep his balance, the back of the wing of his back is different and there’s bowing out of his stomach when he walks."

It is tough for Scotty to raise both his arms up and for him to stand up after sitting down. He has eight doctors, and in eight months, his treatment has cost $38,000.

"Everything from doctor bills to doctor visits to just watching him deteriorate,” said Emily. “He's not the healthy, little bouncy, bubbly kid that he used to be," she added.

Scotty keeps his head up high.

“With my personality, I don't really mind, like I don't like it, and I have yelled a little bit to myself, but I don't usually cry about stuff,” he said.

Scotty just learned of a conference in Boston specifically for people with his condition. His mother says it is a must-go event for their family.

“I need to know more, I need to know as much as I can find out,” said Emily. “I need Scotty to see that there's other people like him out there, and there is help,” she added.

The family says it will cost $3,000 for Scotty and his mom to go the conference.

If you would like to help, go to “Help get Scotty to the FSHD Conference” on gofundme.com.