New documentary featuring West Chester’s mother and son battling a rare brain disease premieres on Sunday

PHILADELPHIA (CBS) — A new documentary comes out this weekend about a rare brain disease and features a family from West Chester and researchers from the University of Pennsylvania. CBS Philadelphia got a preview.

The movie is called “Eloquent,” and it’s about patients with a frightening disease who find strength and support each other. They have high hopes for what could be a breakthrough treatment being researched at Penn.

“The whole right side of my body is affected,” said Trent Clayton.

Clayton has mobility issues related to a rare brain condition.

“It can be tough sometimes,” Clayton said.

Clayton and his mother Darla, who live in West Chester, both have abnormal blood vessels and brain damage. The condition is called cavernous malformation.

“I’ve had headaches every day for four years now,” Darla said.

For Trent. who’s 19, it started as a baby and couldn’t use his right hand, a problem doctors shouldn’t have ruled out.

“They assured us that he was probably just left-handed and unfortunately it happens to a lot of our people where doctors don’t take it seriously,” Darla said. “We came home and his brain continued to bleed for months because the doctor didn’t think it was serious.”

Trent ended up having three brain surgeries.

“He said, ‘What if I die? ‘” Darla said. “It stopped us in our tracks. How do you respond to that? We don’t know what’s going to happen.”

Their story will be one of three featured in a new documentary called “Eloquent.”

“When they incised his brain, black blood like motor oil started flowing out,” said, “I will always have that picture.”

The documentary premieres Sunday at Ambler.

“That’s pretty cool,” Trent said. “It’s going to be really fun.”

The film also features researchers from the University of Pennsylvania working on a potentially breakthrough treatment.

“We currently have a model where we were able to arrest the progression of lesions in the laboratory,” said Dr. Jan-Karl Burkhardt, “and we are delighted.

Burkhardt, a neurosurgeon and researcher, says it would be an important alternative to surgery, the only treatment currently available.

So from brain surgeon to movie star?

“Yeah, I’m not really a movie star,” Burkhardt said.

Sharing the spotlight with Trent, who, despite his condition, sets records by throwing athletics events.

The documentary was produced by the Alliance to Cure Cavernous Malformation. The first is Sunday at Ambler.

There is also a benefit concert on Saturday in Conshohocken.

For more information on the documentary and the benefit concert, Click here.

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