Some medical journals say there may be 200 people worldwide with the same genetic disorder Kopp has. Her mother, Christy, says the number might be as low as 60.
Christy Kopp says five American families are currently dealing with Sjogren-Larsson Syndrome and she has talked with every one.
It is that rare.
So, yes, Kayla Kopp is used to being the focus of a lot of attention. Maybe that is why, when she walked in front more than a dozen cameras, she was unfazed by it all.
She was at The Children's Hospital Gait Lab. It was her sixth visit since 2003.
This week, she also became part of the 2,000th clinical gait study analysis done at Children's.
Sjogren-Larsson Syndrome impacts Kayla's skin. It also impacts the way she walks. Her right foot points harshly to the right. Her left foot does the opposite.
As she walked on the floor at the Gait Lab, cameras in all directions captured the movement of small sensors attached to her body. It is the same kind of technology used by video game creators and movie special effects wizards.
Dr. Frank Chang says the prevalence of the technology in the entertainment industry these days has made the technology much more accessible and efficient in medical settings.
"That's what's driving this software to get better and better," he said. "We can take advantage, and the kids can benefit from that."
The sensors trigger the computers to monitor the movement of her body and approximate the movement of her bones. Doctors can study the data and determine the next, best course of action.
"We think that walking is so simple. I think we saw here today with all of the mechanics of walking, that for some folks it's not so simple, it's very complex," Christy Kopp said.
She says the gait lab's work is clearly making a difference.
"She actually made great gains," she said.
(KUSA-TV © 2010 Multimedia Holdings Corporation)