Five years ago Lauren Henderson was a teenage jock tearing through her Leawood, Kans., neighborhood on a skateboard. Now she lives in a world of perpetual darkness. When she was 15 she was diagnosed with hereditary coproporphyria, a rare disorder that can be fatal if left untreated. In Henderson’s case it caused nerve damage and a sensitivity to light so acute that if she turns on the lamp in her room for more than five minutes at a time, her skin begins to burn. Both legs, one arm and her stomach are paralyzed, and, confined to her bed, she receives all of her nutrition through a tube. Although medication provides some relief, she passes her days in such constant, intense pain that even putting on a shirt can be excruciating.
Even worse was the loneliness and isolation that Henderson used to feel. Her school friends would visit, but she had a hard time relating to them. That began to change last July, when she logged on to a computer network sponsored by the L.A.-based Starbright Foundation that aims to help seriously ill kids and teens cope. Molly Pearce, 14, who has Hirschsprung disease, a rare bowel defect, was nervously preparing for a November blood transfusion in a Colorado hospital when she had an online chat with Henderson. “We connected so well,” says Pearce. “I kind of forgot I was even sick.”
The shared experience of illness and pain drew the pair together over hours of phone and computer chats. “We talked about [feeding tubes] a lot,” says Henderson, laughing. “But we talked about normal stuff too, like movie stars,” adds Pearce. Says Henderson’s mom, Debbye, 49: “Lauren went from being reclusive—which was not her fault—to laughing again.” And never more than on July 16, when, to fulfill Henderson’s 18th-birthday wish, Pearce and another Internet friend—Spencer Riddle, 15, of Bountiful, Utah, who has cystic fibrosis—traveled to Leawood to celebrate. They giggled and gossiped like typical teens, talking about George Clooney, rock bands and nurses who say, “It’ll only hurt a little.” And they shared the dreams they hold against the odds: Pearce wants to be a vet, Henderson a doctor and Riddle plans to study genetics. “He wants to cure all our diseases,” says Henderson in the dark of her bedroom. Whispers Pearce: “That would be good.”