Sunday, February 14, 1999
World opening for Indiana boy, too
BY RACHEL MELCER and JANET WETZEL
The Cincinnati Enquirer
Xeroderma pigmentosum (XP), a genetic disease that affects 1,000 people worldwide, has been keeping two Tristate children out of the sun.
Until now.
XP AT A GLANCE
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• Xeroderma Pigmentosum (XP) affects 250 children in this country. The incurable genetic disorder prevents DNA — the body's genetic blueprint — from repairing itself. Patients must wear protective clothing and eyewear and use skin care products to avoid skin cancers and eye damage.
• Both parents must have a particular recessive gene that connects to pass on XP. And even if the genes connect, which is extremely rare, there is only a one-in-four chance of a couple's child being affected.
• Most cases are diagnosed when a child is 1 or 2 years old. Symptoms include extremely sun-sensitive skin that burns severely with minimal exposure, early freckling, dry and prematurely aged skin as well as light-sensitive eyes.
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The malady transforms the ultraviolet rays of the sun — and even some indoor lights — into carriers of potentially deadly skin cancer. Those who have XP must stay behind specially tinted windows and under certain types of indoor lights, unless they can obtain NASA-designed “spacesuits” able to protect them.
Five-year-old Abby Perkins-Banks of Middletown received her suit two months ago. Last week, she took her dream vacation to see Walt Disney World and the Atlantic Ocean in Florida.
Cody Lloyd, 7, of West Harrison, Ind., found out two weeks ago that his classmates at North Dearborn Elementary School collected enough of their pennies to buy him two of the suits, which cost $1,000 apiece. They should arrive in about six weeks.
“He's real excited about the whole thing. This is something he's wanted for a long time,” said his mom, Jennifer Lloyd. With two other sons to support, she could not afford the suits on her own.
Cody had been taking classes through a video phone and computer until this year, when school administrators spent $14,000 to tint windows in his classrooms and common areas, as well as on his bus. Cody now mingles with newfound friends, but he still cannot go out for recess.
That's what motivated his classmates to begin bringing in their spare change and small cash donations from their parents. In one week, the 684 kids in pre-kindergarten through fifth grade had collected $2,000.
“Being able to do just the normal things that other children take for granted — the social aspect — has been just wonderful for him” while going to school, Ms. Lloyd said. “He's blossomed.”
“This is a little boy who, up until this year, the extent of his world was right inside this house. We would bring him outside at night, but that was the extent of it.”
Once he stepped into the school, Cody's classmates and their parents learned about his disease. They responded by wanting to help.
On March 27, the school and the local Bigg's store will sponsor a carnival in Harrison to raise money for a small national foundation that provides suits for XP kids.
“Some kids came forward and said, "We'd like to donate,'” Principal Phil Deardorff said of how the recent campaign got started. “We did this just from kids and their piggy banks.”
Sydney and Jamie Bender, sisters from West Harrison, said they cannot wait to see the results of their classmates' efforts.
“It's going to be awesome,” said fifth-grader Sydney. “I was glad to help him out. He's a real sweet guy.”
Cody must remain indoors with just a few of his friends during recess periods. But once his suits arrive, he will be able to play in the sun for a couple hours at a time.
“He needs to play with his friends,” said third-grader Jamie. “I think he'll have a lot of fun going outside.”
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World opening for Indiana boy, too
