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After scouring the Internet, looking for new information and trying to find others whose children have xeroderma pigmentosum, the Feltners went into action. They replaced the butcher paper on their windows with special UV-blocking plastic, and adjusted their schedules, staying up later so Paris could spend more of her waking hours during darkness. And they checked out local malls and stores, making a list of off-limits places with fluorescent or halogen lighting.When Paris was 18 months old, Todd heard about a foundation in Virginia that made a special head-to-toe sunblock suit, using material designed by NASA. One drawback: It would cost as much as $2,000. Through rummage sales and donations, friends and strangers rallied to put some sunshine in Paris's life, raising $5,000 -- more than enough for two suits.
At first, Paris hated wearing the outfit, especially in summer, when temperatures in southern Utah can top 115 degrees. But these days, anxious to experience daylight, she enthusiastically jumps into the bright-blue suit for trips to and from school, dance class and friends' homes. During a town parade to celebrate Pioneer Day last year, she wore the suit under a spangled costume while riding on a float with her dance troupe.
"It's like a sleeping bag," explains Paris, lying on the floor to slip into the coveralls for a trip through the backyard to her friend Cambra Dinsmore's house. After her mom helps adjust her hood and sunproof goggles, she bolts out the door into the glaring midday heat and skips to Cambra's back door, where she is quickly ushered inside. Giggling, she peels off the suit and tosses it onto the sofa like a dirty T-shirt before heading to Cambra's room to play with dolls.
Many of the Feltners' neighbors have tinted their own windows in case Paris comes to visit. And at Washington Elementary and the Mormon temple, every window has been tinted so Paris can safely attend kindergarten and Sunday school.
In the fall of 2002, the community rallied together to raise money to build an indoor playground for Paris. More than 150 people pitched in to construct an addition to the Feltners' house that includes a swing set, small swimming pool and a sky-blue ceiling with puffy clouds. "I couldn't imagine what it must be like for a child not to run out and swing to her heart's content," says Ed Braithwaite, a local building contractor who contributed materials and labor to the project. "It's one of the small pleasures in life." Now Paris can spend hours swinging under her very own sky, pumping her legs in rhythm with the pop music that she turns to full throttle on the radio.
The family has even found ways to take vacations, traveling after dark, and taping black plastic to the windows of hotel rooms before Paris is allowed inside. They've visited Disneyland, and Todd dreams of one day flying his daughter to Paris to explore the city's beauty by night.
None of it comes without strict vigilance, and there have been close calls. "If you don't live with this every day," says Todd, "it's easy to forget."
"She knows the consequences of being in sunlight. We don't have to remind her. And yet she isn't growing up afraid," says her mother.
If exposed to light, "I could die," Paris says simply.
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