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TwitThisA Cruel Disease
She comes out to the grass to dance just as the setting sun turns the red bluffs surrounding her home to cool shades of purple and lavender-gray. As she leaps through the shadows in her bare feet, six-year-old Paris Feltner watches for the stars to appear and the moon to rise."When the moon comes out, it's safe for me," she explains, spinning and twirling. "I love the moon." Indeed late at night, after she says her bedtime prayers, Paris tells her parents, "Love you big as the moon."
She does not know the warmth of the sun on her face or the beauty of a sunrise. Like most any six-year-old girl, she wants to be a princess when she grows up. But Paris isn't like other children. She is a child of the night.
Her mother, Jennifer Feltner, will never forget the day just before Easter in 1999 when she picked up the telephone in her kitchen and heard the news. "The results from Paris's biopsy are positive," the dermatologist told her. "She definitely has X.P." Jennifer says, "I went numb."
"X.P." is short for xeroderma pigmentosum, a rare genetic condition that prevents sun-damaged skin cells from repairing themselves. Affecting only one in a million people, the incurable disease could lead to skin cancer if extreme steps aren't taken to avoid all ultraviolet light, including indirect light from windows and fluorescent bulbs. Nationwide, only about 250 people are documented with the disorder, most of them children, states Dr. Kenneth Kraemer, a research dermatologist at the National Cancer Institute in Bethesda, Maryland. X.P. sufferers are more than 1,000 times as likely to develop skin cancers as other people, he says.
It is a cruel disease, requiring those who have it to spend most of their lives behind shuttered windows, shielded from sunlight. Some patients might lose their sight, become disfigured or degenerate neurologically and become mentally retarded -- afflictions that Paris has so far avoided. Jennifer and Todd Feltner are grateful for that, but they never imagined raising a child in darkness.
The Feltners, both Mormons who grew up in large families, married in 1993 and settled in Washington, Utah, with dreams of creating a household full of laughter and song together. "Our religion emphasizes family as the most important unit on this earth," says Todd, 32, "the source of joy and happiness. Jennifer and I had hoped to have at least four kids, maybe more."
In the early days of their marriage, the pair waited tables at Bryce Canyon National Park. Todd, who went on to become an accountant, remembers hearing some parents calling their child: "Paris, come here!" He thought, That's the perfect girl's name.
Todd and Jennifer's firstborn was a healthy boy they named Parker. In 1997, they were ecstatic when Jennifer became pregnant again. Their daughter entered the world on February 12, 1998, weighing seven pounds, four ounces, with gray-brown eyes and dark curls. They agreed to name her after the City of Light.
They brought Paris home from the hospital and took the same precautions against the sun that any parent takes with an infant. They bought her a sunbonnet and covered her with sunscreen before outings to the park. During get-togethers with relatives, they made sure to seat her in a shady spot.
For the first three months, there were no signs of anything unusual. Then, little dark spots began to appear on Paris's legs, arms and face. In the mall, strangers stopped the Feltners to comment on their baby's cute freckles. "I had freckles as a kid -- we thought it was perfectly normal," says Jennifer, 33. She didn't know they shouldn't be there.
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