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Because she was diagnosed as an infant, Paris's chance of living a long life is good -- provided she continues to avoid the sun's rays. The National Cancer Institute's Kraemer, who has studied X.P. since 1971, knows of one patient who lived until his mid-70s. That's rare, but not impossible, he says. "We see different degrees of sensitivity. Those who are protected early are going to do better."Meanwhile, scientists are working on treatments, including the acne drug Accutane and creams made from bacterial protein, to help reduce the frequency of cancerous lesions. And through gene therapy, there is hope one day for a cure.
Luckily, Paris has thus far had only one mole removed -- on her right thigh -- and it was benign. Her parents' biggest fear is melanoma. "We put sunscreen on her first thing every morning and check her skin every day," explains Jennifer. "We always have to think ahead," she adds. And while Paris seems content now, the Feltners know difficult times are just down the road.
What happens when Paris is a teenager, Jennifer worries, and wants to go out during the day with friends? Will she be able to attend college and find a job? If she marries and has children (she would have to marry another X.P. carrier with the same genetic defect -- a very unlikely possibility -- to pass along the disease), how will she do all of the things busy moms need to do?
They try to remain upbeat, but the Feltners have plenty to worry about, especially given that their youngest child, a one-year-old boy named Paxton, has also been diagnosed with X.P.
"It about broke my heart," says Jennifer, who debated with Todd for four years over whether to have any additional children after Paris's diagnosis.
"Having Paxton was the hardest decision we've ever made," says Todd, but with a 75 percent chance that the baby would not get the disease, he and Jennifer thought the odds were in their favor. Though the Feltners have no plans for additional children, they are determined to make the best of the cards they've been dealt.
Paris's attitude has helped. When she learned that Paxton had X.P., she clapped her hands and cheered, says her mother. "She ran to her swing set and shouted, 'Me and Paxton, me and Paxton! He's going to love it in here!' "
"At least with Paris, he'll have someone who can relate to what he's going through," Jennifer says quietly, watching her daughter cover Paxton with wet kisses. "They're going to be the best of friends."
Together, they will be children of the night. On a warm, clear evening scented by desert sage, Paris Feltner asks, "Is it dark enough for me?" When her mother nods, she excitedly bolts out into the fresh air, leaving the front door wide open. She scrambles onto the trampoline in her backyard and bounces under the stars, pigtails flying. As her brother watches from the arms of his mother, Paris jumps higher and higher, reaching for the moon.
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