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Mom Makes Plea for Boy Losing Sight
By MICHELLE TERWILLEGER, Californian staff writer
From the Bakersfield Californian
Laura Cleverly knows it's normal for 4-year-olds to have some strange behaviors.
Her son, Colton Chase Meyer, insists on wearing his cowboy boots all the time -- even with shorts -- and giggles at practically anything. But when Colton began walking into trees and walls last year, she knew there was a problem.
Cleverly took him to the eye doctor, figuring he just needed glasses.
Though Colton does need glasses for farsightedness, it turns out his eyes are in far worse shape than his mother expected.
An expert at UCLA Medical Center confirmed that Colton has retinitis pigmentosa, a genetic defect that can cause blindness and has no cure.
Approximately 100,000 to 200,000 Americans have retinitis pigmentosa, but few people are familiar with it, according to The Foundation for Fighting Blindness.
Cleverly hopes public awareness of the disease will help her son and speed up the search for a cure.
"I don't want him to lose his sight completely," she said.
It is difficult for doctors to predict how quickly the disorder will progress, and Cleverly worries that Colton's vision may be fading fast, even as he still enjoys watching cartoons and riding his tricycle.
"In a case like this, legal blindness wouldn't be too uncommon in the teen-age years," said Dr. Jeffrey Lehmer, Colton's local ophthalmologist. Total blindness can occur in the early adult years, but it varies among patients, he said.
Although Cleverly does not know exactly when or if her son will lose his eyesight completely, she wants to do what she can for him.
Cleverly wants friends and community members to show the world to Colton while he can still see by sending him photographs from their travels.
She plans to compile the pictures in a scrapbook for him.
"I went and got a P.O. box to have people send photos of Yosemite or anywhere," Cleverly said.
Cleverly was inspired by an "Inside Edition" report about the granddaughter of former Chicago White Sox owner Bill Veeck. When Rebecca Veeck was diagnosed with retinitis pigmentosa, her family took her on a huge trip to visit places she may not be able to see later in life, according to the report.
Cleverly said she can't quit her job to take her son on trips, but the scrapbook idea is the same kind of concept.
Cleverly does not want financial assistance -- she works with the Arvin Union School District as a special education teacher -- but she hopes that people will donate pictures to her son and also give money to research efforts.
"The more public awareness I can raise for my son, the quicker the cure," Cleverly said. She encourages people to donate to The Foundation for Fighting Blindness, which supports research efforts for retinitis pigmentosa and related disorders.
Retinitis pigmentosa is caused by a genetic defect that destroys the photoreceptor cells in the retina that allow people to see. It usually begins by poisoning the rods, which facilitate night vision and peripheral vision.
Typically, the first sight difficulties patients with retinitis pigmentosa develop is the loss of night and peripheral vision.
Colton has already lost much of his night vision, his mother said.
Walking home from a neighbor's house in the dark recently he couldn't even see his mother, she said.
Despite rising energy costs, Cleverly has to keep most of the lights on in their house because Colton can't see in dim rooms.
"It's so hot, we can't go outside," she said. "When he comes in from outside, he cannot see. He has to sit down on the couch for a couple minutes to adjust."
With the progression of the disorder, patients usually develop tunnel vision, making it impossible to see anything except what is right in front of them.
After attacking the rods in the retina, the disorder usually causes the cones to deteriorate. The cones allow for central vision and color perception.
The field of vision narrows while color perception degenerates, and eventually retinitis pigmentosa can lead to blindness.
Genetic research being performed for retinitis pigmentosa appears promising, said Dean Bok, a researcher and professor of neurobiology and ophthalmology at Jules Stein Eye Institute at UCLA Medical Center.
In studies on dogs with similar eye disorders, scientists injected the dogs' eyes with a virus that was changed so it could not cause problems or reproduce itself, but was used to carry genetic material to repair the damaged cells, Bok said.
"It goes into cells in the retina and delivers rescue genes," Bok said.
After the injection, the dogs who had lost their vision could see again.
"It can prevent the cells from dying," Bok said. "Perhaps it can repair damage to a cell that has not yet died."
Bok believes human trials could occur within the next decade.
Cleverly hopes Colton's eyesight can hold out that long, but doctors have said they are not sure.
"All we can do is what we're doing, which is vitamins," Cleverly said. "All we can do is slow down the progression."
Doctors advise patients with retinitis pigmentosa to take vitamin A because it may prolong patients' vision. She also gives the vitamins to her 8-year-old son, Bronson Meyer, who is scheduled to be tested for retinitis pigmentosa next year.
Cleverly doesn't know how much Colton understands his condition, but he does get frustrated when he's in a dim room and can't see his toys or his family.
Cleverly assures him that she will be there for him no matter what happens.
"I'm just trying to be positive and hope that something good comes out of this," she said. "I'm really hoping for a cure."
How you can help: Contributions of photographs for Coltons scrapbook may be sent to: For You, Colton, P.O. Box 10511, Bakersfield, CA 93389.
Donations for research may be sent to: The Foundation for Fighting Blindness, 11435 Cronhill Drive, Owings Mills, MD 21117. www.blindness.org
Date last modified October 28, 2001