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TwitThisA Normal Life?
But during Paris's nine-month exam, Dr. Robert Dowse commented that the freckles were troublesome. "A baby shouldn't have them," he said. He referred them to Dr. Wendy Matis, a dermatologist five hours away in Salt Lake City, who was equally puzzled."She kept going from our exam room to her office to look up things in her medical books," recalls Todd. "You could tell she'd never seen anything like this before." He and Jennifer waited for two hours, growing increasingly nervous. Finally, the doctor came in with the startling news: "I think it's X.P. -- xeroderma pigmentosum," she said.
Matis wrote the name down and told them that X.P. was a genetic disease. "We thought, This is impossible," says Todd. "Nobody in our families has anything like this." She explained that any offspring of parents who were both carriers (most often unknowingly) had a 25 percent chance of having X.P., and then she listed the risks that camewith the disease. "Never in my wildest dreams did I expect to hear something so bad," Jennifer says. The doctor went on to say that, until they got results from a skin biopsy to confirm the diagnosis, the Feltners should treat Paris as if she definitely had X.P. Light should be blocked from every window. Paris should not be allowed outside during daylight, even for a minute, and extra care should be taken when opening the door to talk to neighbors or fetch the mail.
Todd and Jennifer left the doctor's office and rode home in silence with blankets covering the side windows to shield Paris from the afternoon light. "We were stunned," says Todd. "In fact, we were in denial."
Still, they stopped at the grocery store to buy a roll of butcher paper for the windows, remembering the doctor's frightening words: "Every exposure counts." The next morning, the Feltners went from eating their breakfast in a sun-splashed kitchen to sipping orange juice in the dark. Parker, who is free of the disease, complained when his bedroom windows were darkened. But he adjusted to the idea when his mother explained that sunlight could be dangerous for his sister.
Jennifer, a homemaker and part-time dance teacher, burst into tears days later when Paris crawled to the sliding door and peeled back the butcher paper. "It was so depressing not to see out," she says. What made the weeks spent indoors worse was the waiting for news about the biopsy.
Finally, nearly five months later, the call came. "Positive" was the only word Jennifer heard. Sobbing, she told the doctor she couldn't bear to talk about it and hung up. Then she called Todd, who says he sat, immobilized at his desk, knowing that when he walked through the front door that night, his family would be changed forever.
After a somber dinner that evening, the Feltners put Parker and Paris to sleep, and then retreated to their bedroom to hold each other. "All we could think about were the things we wouldn't be able to do as a family," says Todd. A few nights later, overwhelmed with sadness and unable to sleep, Todd curled up alone on the living room sofa. But after several weeks of crying and worrying, he made a decision. "We have to find a way to be positive," he told Jennifer. "We have to move on if Paris is going to have anything resembling a normal life."
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