New documentary featuring West Chester mother, son fighting rare brain disease premiering Sunday
PHILADELPHIA (CBS) -- A new documentary is coming out this weekend about a rare brain condition, and it features a family from West Chester and researchers at the University of Pennsylvania. CBS Philadelphia got a sneak peek.
The film is called "Eloquent," and it's about patients with a scary condition finding strength and supporting each other. They have high hopes for what could be a breakthrough treatment being researched at Penn.
"The entire right side of my body is affected," Trent Clayton said.
Clayton has some mobility issues related to a rare brain condition.
"It can be difficult at times," Clayton said.
Clayton and his mom Darla, who live in West Chester, both have abnormal blood vessels and lesions in their brain. The condition is called cavernous malformation.
"I've had a headache every day for four years now," Darla said.
For Trent. who's 19, it started when he was a baby not using his right hand, an issue that doctors should not have dismissed.
"They assured us he's probably just a lefty and that, unfortunately, happens to a lot of our people where the doctors don't take the concern seriously," Darla said. "We went home and his brain kept bleeding for months because the doctor didn't think it was a big deal."
Trent ended up having three brain surgeries.
"He said, 'What if I die?'" Darla said. "It stopped us in our tracks. How do you answer 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 cut into his brain black blood like motor oil started pouring out," said, "I will always have that image."
The documentary is premiering Sunday in Ambler.
"It's pretty cool," Trent said. "It's going to be really fun."
The film also features researchers at the University of Pennsylvania working on a potentially revolutionary treatment.
"We have currently a model where we were able to stop the progression of lesions in the lab," Dr. Jan-Karl Burkhardt said, "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 a brain surgeon to a movie star?
"Yeah, I'm not really a movie star," Burkhardt said.
Sharing the spotlight with Trent, who, in spite of his condition, is setting records throwing in track and field events.
The documentary was produced by the Alliance to Cure Cavernous Malformation. The premier is Sunday in Ambler.
There is also a benefit concert Saturday in Conshohocken.
For more information on the documentary and benefit concert, click here.