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It's easiest, of course, when she's in her "protective bubble," as her mom calls it
-- at home or school or church. There, people know her. To them, she is just Clara
-- the funny, kind girl who wants to be a doctor when she grows up, who's quick to help classmates with homework when she finishes her own. She also volunteers as a mentor at the Special Gifts Theatre, an acting troupe for children with special needs. One cognitively impaired girl needed help with her lines. "It's fun," Clara says, "to help someone and give them a better chance at life." People often assume that Clara can't speak or understand them. Her classmates at school, however, are perplexed that a reporter would be doing a story about her. "Why?" one asks. "Because Clara is awesome!" another quickly replies. The support is heartening, her parents say. This is what they hoped for their daughter, that she would be accepted, well-adjusted and confident
-- though they also know that she has many challenges. When she goes to middle school next year, there will be new people to meet, new adjustments. Same with high school, college, dating. Doctors have told her parents that Clara is more likely to worry about her appearance when she reaches adolescence. "Those are hard things to think about in a world where your physical presence, the way you look, is so much a part of society and how people react," says Eric Beatty, vice president of a manufacturing company. "But as any parent will know, you just get on with life." Clara -- the girl with big, brown eyes and an easy smile -- has helped them truly learn how to do that. "We're all learning that we're just going to do what we're going to do, and we're not going to pay attention to what other people think," Janet Beatty says. Still, the urge to protect will always be there. "I just don't want her spirit to ever be crushed so much that she can't recover," she adds. "That's why it's good that she has the thick skin. I just want to keep it thick. "She needs it." ___ Online: More on Treacher Collins syndrome:
http://ghr.nlm.nih.gov/condition/
treacher-collins-syndrome
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