Ray of sunshine could be deadly for Cameron Bricker, afflicted with rare genetic disorder
Family shields girl from light
Last Updated: 383 days ago
EATON, Ohio - Exposure to bright light can cause cancer, and even a ray of sunshine could be deadly for a 12-year-old girl from just east of Richmond afflicted with an extremely rare disorder.
Cameron Bricker, 12, has a rare genetic disorder called Xeroderma pigmentosum, or XP. Cameron was first diagnosed at age 2. She's one of fewer than 250 children in the U.S. suffering from the disorder.
Cameron's parents have taken extraordinary measures to keep her alive, and scientists are working hard to find a cure.
In the early evening hours, Cameron is on top of her world as she rides a horse named Apache at an indoor riding facility.
"Cameron has always loved animals, has always connected with them from a very young age," said Shari Bricker, Cameron's mother.
But as Cameron dismounts, the fun is over, because a ray of sunshine is piercing her world of darkness.
Cameron wears a hood, coat and gloves, necessities every time she goes outside. The windows on the family van are dark. At home, all the windows are tinted.
"We've got different light bulbs in the house. We've got UV sleeves on the fluorescent bulbs," said Rich Bricker, Cameron's father.
XP makes Cameron's skin unable to recover from any amount of sunlight or other ultraviolet exposure. Even a few minutes in the sun can cause cancer.
"The sunburn doesn't heal, even after short exposure to sunlight, or blistering even after very small sunlight exposure," said Dr. Suk Hee Lee, a professor in the Department of Biochemistry and Molecular Biology at Indiana University.
Cameron's condition is even more unusual. Only about 20 percent of children with XP deal with a neurological disorder restricting mental and physical development.
Lee is searching for a cure, researching XP-infected genes and cells.
"The XP patient will die if these skin cancers develop, but they are untreated," Lee said.
An XP diagnosis comes with a life expectancy of 18 years.
"All these doctors came in and told us about what she had, and we came home that day, and I just remember crying," Shari Bricker said.
Cameron's radiant spirit dried her mother's tears. Determined to prolong their daughter's life, the Brickers fortified their daily routine to protect Cameron from direct sunlight.
"That's what she knows. If we were somewhere and there is a ray of light that comes across the floor, she will walk around it. She will not walk through it," Rich Bricker said.
Vigilant avoidance of sunlight is absolutely essential, Cameron's dermatologists said.
Semiannual doctor visits involve documenting and monitoring every freckle and mark on Cameron's body. Those determined to be a cancer threat are removed.
"Sometimes you just wish, I personally, that I could do something to enable her to go outside, you know, because she loves it outside," Rich Bricker said.
Once a year, the Brickers join other XP families from around the world at a weekend camp in Sacramento, Calif.
Nighttime field trips, such as a train ride, are the norm, and indoor activities are guarded by carefully covered windows.
Similar safety measures are in place at Cameron's elementary school back home. William Bruce Elementary School principal Kip Powell said renovations to lights and windows on Cameron's behalf cost about $30,000, a small price, he said, to see the joy the sixth-grader brings to others.
"The kids enjoy Cameron. They enjoy reading with her," Powell said. "They enjoy going to lunch with her. They enjoy recess with her."
"I love Cameron. She is so sweet," said Mary Neavin, Cameron's teacher. "She has cognitive delays, but she is always happy."
Rarely is Cameron happier than when she is with Apache. The time she spends with the horse is part of a weekly therapy session. Apache is helping counter Cameron's neurological issues by building her core strength.
Cameron's favorite part is near the end, when they gallop.
Research toward a potential cure is in a pre-clinical, trial stage. Some treatments have shown improvements in XP-infected mice. Human clinical trials could be possible within the next 10 years.
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