PHILADELPHIA (TUSEN) — A new documentary about a rare brain disorder comes out this weekend, featuring a family from West Chester and researchers from the University of Pennsylvania. TUSEN Philadelphia got a sneak peek.
The film is called ‘Eloquent’ and it is about patients with a scary condition who find strength and support each other. They have high hopes for what could be a breakthrough treatment under investigation at Penn.
“The whole right side of my body is affected,” said Trent Clayton.
Clayton has mobility issues related to a rare brain disorder.
“It can be difficult at times,” 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 a headache every day for four years now,” Darla said.
For Trent. who is 19, it started when he was a baby not using his right hand, a problem doctors should not have ignored.
“They’ve assured us that he’s probably just a left-hander and that’s unfortunately happening to a lot of our people where the doctors don’t take the concerns seriously,” Darla said. “We went home and his brain continued to bleed for months because the doctor didn’t mind.”
Trent ended up having three brain surgeries.
“He said, ‘What if I die?'” Darla said. “It stopped us. How do you answer that? We don’t know what’s going to happen.’
Their story will be one of three in a new documentary called ‘Eloquent’.
“When they cut into his brain, black blood started pouring out like motor oil,” said, “I’ll always have that image.”
The documentary will premiere in Ambler on Sunday.
“It’s pretty cool,” Trent said. “It will be very nice.”
The film also shows researchers from the University of Pennsylvania working on a potentially revolutionary treatment.
“We currently have a model that allows us to stop the progression of lesions in the lab,” said Dr. Jan-Karl Burkhardt, “and we’re excited.
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 much of a movie star,” Burkhardt said.
Sharing the spotlight with Trent, who, despite his condition, is setting records by throwing athletic events.
The documentary was produced by the Alliance to Cure Cavernous Malformation. The premiere is Sunday in Ambler.
There will also be a benefit concert in Conshohocken on Saturday.
For more information about the documentary and the benefit concert, click here.