Diann Shaddox Foundation for Essential Tremor
12-year-old battles rare condition
Posted By: Camila Orti
A Lincoln boy is trying to live a normal life as he battles a rare brain condition.
12-year-old Thomas Casady is pretty mature for his age. The sixth grader enjoys cooking for his family, reading and playing golf. But there's something else that has made him grow up a little quicker than most kids.
"They diagnosed it as myoclonic dystonia, which is a really rare disease," Dad T.J. Casady said.
Thomas is battling constant muscle spasms that often lead to full-blown episodes.
"I can't breathe sometimes, I'll go into a seizure sort of thing," Thomas said.
The condition landed him in the Emergency Room on Sunday when a seizure didn't stop after more than two and half hours.
"I'm just mad that I don't know what to do or how to help it," Thomas said.
Plus, Thomas says he has a constant headache, a throbbing that hasn't stopped since May.
"It's every day, all day," Thomas said.
Parents Kristi and T.J. say their son was diagnosed eight months ago, but the condition has progressed. They're still looking for the right treatment to help him manage the pain.
"We just hope that he can enjoy life and not have to worry about what's going to happen next," T.J. said.
So for now, Thomas is taking things day by day, one recipe at a time.
"I'd love to have this go away but I can't so I have to try to not let it overcome me," Thomas said.
The family is hosting a fundraiser on Tuesday at Buzzard Billy's in the Haymarket from 4-10 p.m. View the event's Facebook page here.
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