Sunday, December 31, 2000

Parents start XP support group

Ailment makes sun exposure cancerous, deadly

By David Eck
Enquirer Contributor

        MIDDLETOWN — When her daughter Abby was diagnosed with a rare genetic skin disorder nearly five years ago, Caroline Perkins-Banks quickly learned she was alone.

[photo] Abby Perkins-Banks can attend Middletown Christian School thanks to special film applied to windows.
(Dick Swaim photo)
| ZOOM |
        Doctors “gave you a little book on XP (xeroderma pigmentosum) that didn't have a lot of information in it,” Mrs. Perkins-Banks said. “There was not much to go on. There was no one else to call. It was lonely and it was hard.”

        Now the Middletown resident wants to make sure there is a resource for other parents who have to face the disease.

        Mrs. Perkins-Banks and Cleveland businessman John Hansen recently started the XP Skin Cancer Foundation to act as a support group for those dealing with XP and related disorders. The foundation also will provide information about the disease and raise money for research.

        XP makes the sun and other ultraviolet rays deadly enemies, and those with it cannot go out in sunlight without being covered from head to toe in special protective clothing and sun block. XP causes multiple skin and eye cancers, and ultimately, death.

        Fewer than 200 people worldwide have it, many of them children.

Abby's first vacation
Reported Feb. 2, 1999
        “Our mission is to improve the quality of life for these children and their families worldwide,” said Mrs. Perkins-Banks, the foundation's president and spokeswoman. “Ultimately we want to find a cure. Until then we're striving to help them adjust to daily living.”

        With a special film covering the windows and specially designed protective clothing, people with XP can lead normal lives, stepping out of the darkness and into the light.

        Already the foundation has helped an Amish girl in Indiana who has the disorder.

        Mr. Hansen, whose Cleveland company distributes film that eliminates UV rays, serves as executive director of the foundation and started it with his own money. He also donated the film used to cover the windows of Abby's house and school so she can function in those buildings without her protective gear.

        Typically the film is used to tint vehicle windows and make buildings more energy efficient. But when Mr. Hansen learned about Abby through a news report several years ago, he thought the film might help those with XP.

        “I just saw there was a big opportunity to try and help her and get some help for everybody,” he said. “If she's not getting the money or support or donations, the other families (dealing with XP) probably aren't getting that, either. I want as much of that money as possible to go straight to the research, the clothing and the kids.”

        Mrs. Perkins-Banks has seen the difference in Abby's life since the 7-year-old got a special, NASA-designed space suit that blocked the sunlight. She went on a Florida vacation in 1998, has been able to go to Paramount's Kings Island in daytime, and to church.

        It's a far cry from the world of low-wattage light bulbs, special window shades and after-dark excursions, which Abby endured for about four years.

        Though Abby has outgrown her suit, she has received new protective clothing.

        “Her social skills are just remarkable,” Mrs. Perkins-Banks said. “She went from being an isolated child who had no contact except for family to being in a school with tons of kids of different ages. Her personality has just grabbed a hold of all the excitement of embracing the world, which most of us take for granted.”

        For more information on the XPSkin Cancer Foundation or to make a donation call 1-800-466-8468 (Ohio only) or 1-888-254-0041. The address is 5060 Taylor Road, Cleveland, Ohio 44128. Donations are tax-deductible.

        When originally published, this story failed to include information on the Xeroderma Pigmentosum Society Inc., based in New York state.
        It works with XP patients and their families, as well as those with other sun-sensitivity conditions. It claims that there are 1,000 known cases of XP.
        The address is P.O. Box 4759, Poughkeepsie, N.Y. 12602; (518) 851-2612; or

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