Grady County Teen Begins Treatment For Rare Disorder That Limits Movement, Impedes Speech

A Grady County teenager began receiving treatment in Texas for a very rare disorder that causes pain, limits movement, and makes speaking and eating difficult.

Hunter Edge, 16, of Tuttle, was a multi-sport athlete who played basketball and football, but focused on baseball after entering Tuttle High School, said his father, Dusty. He was already receiving offer letters from small colleges.

But in April 2022, Hunter's neck began twitching. Dusty said initially, the twitches happened two or three times a day. But they became much more frequent until they occurred about 20 times a minute.

Doctors first thought the motor tics would go away. But they never did. In fact, Hunter began losing weight because he couldn't eat normally, said Dusty. Eventually, Hunter was having trouble holding his head up because his neck slumped to the side. Hunter's fingers and toes were contorted as well. He also could not smile or laugh, Dusty added.

"It's literally like walking around flexing your bicep all day. His neck muscle is literally just flexed," said Dusty.

Doctors eventually diagnosed Hunter with Dystonia, a movement disorder that causes involuntary muscle contractions. The condition is especially rare for children, with a prevalence of between 2 and 50 cases per million for those younger than 26 years old, according to a report on the National Library of Medicine.

Although there is no cure, medications and therapy can make symptoms better, said Mayo Clinic.

Dusty said the disorder affected Hunter both physically and mentally.

"He's just a completely different person," said Dusty. "He's been in some very, very dark moments. He's in therapy."

Dusty said Hunter received BOTOX injections to relax his muscles and ease the pain. But they weren't very effective, said Dusty. Also, due to a scheduling issue, Hunter received his injections at Texas Children's Hospital in Houston instead of in Oklahoma. This caused his insurance company to deny coverage, said Dusty.

Doctors recommended that Hunter undergo brain surgery to lessen the symptoms. But Dusty said he feared the risks and possible complications.

"There's a 50/50 chance that would fix him. They can't guarantee anything," said Dusty.

As an alternative, the family opted for Hunter to receive a type of laser therapy at NeuroSolution Center of Austin in Texas.

"They move stuff around in his brain. They try and recalibrate it. And they can tell him, like you know, 'Straighten your hand.' And if it doesn't straighten, they can kind of move that stuff around," said Dusty.

Hunter began the laser therapy on Monday while being accompanied by his mother.

"I miss my family a lot, my friends a lot," said Hunter.

Dusty, who stayed in Oklahoma to work and take care of his two other sons, said he was heartbroken he could not be by Hunter's side in Texas.

"I'm sad that he's not here being a normal kid, going to school," said Dusty.

Dusty said it was unclear how long the laser therapy in Texas will last. But after talking with other people who underwent the same treatment, he was optimistic Hunter's symptoms will improve. 

"Being hopeful. Hopeful that I'll get better," Hunter added. "God helps me a lot."

Dusty said Hunter's mindset as an athlete can help him stay strong during this journey.

"Treat it like he does baseball or any other sport. Just compete," said Dusty.

Because dystonia took Hunter away from the baseball field, he said he learned not to take things for granted.

"I would tell (my teammates )to just enjoy the game while they can because it can be taken from them out of nowhere," said Hunter.

Dusty said the laser therapy was not FDA-approved yet. Therefore, insurance would not cover it. Dusty said the treatment could cost the family up to $300,000 out of pocket. To help cover the expenses, the family created a GoFundMe page where people can donate.