Rachel Nasuti is a "butterfly child." Her skin as delicate as a butterfly’s wing can tear and cause blisters to form over her body, mouth and esophagus. But despite painful and limiting challenges, the Stevenson High School senior has learned to manage life with a rare, incurable skin disease. Having friends in high places doesn’t hurt.
Rachel, 18, is getting support in Hollywood from the likes of Jessica Simpson, Oprah Winfrey and Courtenay Cox-Arquette to bring national attention to her disorder, recessive dystrophic epidermolysis bullosa (EB).
"It’s like a dream," said her mom, Sue Schneider, a seventh-grade special education teacher at Roseville Junior High School. "If I say something about EB, I’m just a mom. It may fall on deaf ears. But if somebody famous does, they get all the press. They have the connections and they have the presence."