Mother, son with rare eye condition use Darth Vader to raise money for CHLA

LOS ANGELES (KABC) -- Even on the sunniest of days, first-grader Charlie Stohl rarely left his Darth Vader mask behind. He and the "Star Wars" icon share a few things in common.

The "dark side" may appeal to 7-year-old Charlie because he suffers from a rare genetic eye condition called ocular albinism, which means he is sensitive to bright lights and it causes other vision issues.

It is when the retina is missing pigment cells, and doctors said pigment cells are crucial to forming vision.

"Because of the way the eye develops, it needs that pigment up front in order to learn how to see," said Dr. Thomas Lee with Children's Hospital Los Angeles.

Since Charlie always had his Darth Vader mask with him, his mother Ashly, who is a professional photographer, saw moments that were a little dark and a little funny that she could capture.

The mask also helped her capture what was happening on the inside with her son.

"When he's looking at the camera but his eyes aren't looking directly at it, then that's what you sort of notice, something's not connecting. So the mask takes that away," Ashly said.

Although Charlie is legally blind, ocular albinism is not progressive. He can go on to live a full, productive life.

But Ashly realized many children who were also patients at Children's Hospital Los Angeles might not have that chance. So she and Charlie created a photo book called "Charth Vader" to raise money for other vision patients.

"I think it makes it a little more universal. It's not just about Charlie, this one particular kid, but it's all kids, any kids with challenges," Ashly said.

The book can be purchased at www.ashlystohl.com or www.peanutpressbooks.com.