When she was 12, Zara Hartshorn, from South Yorkshire, England, started feeling like a little girl trapped in an old woman's body. Strangers often mistook her for the mother of her older sister Chloe, and she endured taunts like "granny" and "monkey" from other children, reports the Daily Mail. Hartshorn, now 16, suffers from a rare genetic disease — it affects only about 2,000 people worldwide — called cutis laxa, which causes the fatty and connective tissues and bones under the skin to deteriorate and can lead to the appearance of extreme premature aging. She's the subject of an upcoming episode of the documentary series "Extraordinary People" (airing Thursday in the U.K).
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Hartshorn inherited the condition, which was initially misdiagnosed as lipodystrophy (also called "reverse Benjamin Button disease"), from her mother, Tracey Gibson. The symptoms first appeared when she was a young child. At 4 years old, her physician noticed excess flesh around her jawline. "Mum explained that I had an illness like she did," she said, "but that I was beautiful and shouldn't pay any attention to what anyone said." By the time she was 8, she was being bullied mercilessly at school. Gibson says her daughter "was kicked and punched." Hartshorn adds, "It got so bad, I stopped to school going for awhile."
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Switching schools didn't help her self-esteem. Hartshorn dreaded being asked her age. She recalls, "I was even mistaken for a teacher in school on a couple of occasions, which was just mortifying in front of my classmates," according to the Mirror U.K. Her mother took her to get collagen injections, believing it would help tighten her skin, but they turned into hard lumps instead.
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Her story reached Dr. Abhimanyu Garg, M.D., a lipodystrophy expert in Texas, who provided a correct diagnosis to her and her mother. Her older sister Jolene, 24, also suffers from a less severe form of cutis laxa. Another Texas physician, plastic surgeon Robert Ersek, M.D. offered Hartshorn a free face-lift and rhinoplasty. "I realized how life-changing it could be, but I was still so nervous about how it would turn out. The night before the operation I couldn't sleep because I was so excited."
When the bandages first came off, she was upset by the results. "Everything was so swollen. I thought I'd made a huge mistake. But after nine days I had the nose cast removed and realized straight away how good it looked." [See Zara postsurgery].
While cosmetic surgery won't cure her condition and she's unsure if she wants to have children for fear of passing on the gene, it has given her the confidence to pursue a normal life. Hartshorn says she wants to go to college and eventually open her own beauty salon. "I remember the unhappy little girl who was bullied, and I want to go back and tell her it will all be all right. Now when I look in the mirror I can see opportunities that weren't there before."
Hartshorn says that in middle school she finally found friends who loved her for who she was as a person and didn't care about her appearance, but she was always too insecure to date. She met her current boyfriend Ricky, 22, a housepainter and aspiring decorator, through mutual acquaintances after her procedures. "He's seen pictures of me before and told me I was beautiful," she says, "but I wouldn't have believed him." Ricky says, "I tell her she's beautiful every day. But I mean she's a beautiful person inside as well."
Now fully recovered from her surgery and moving ahead with her life, she finally feels like the teenager she is. Still, through enduring the torment of bullies and holding her head high, she's gained a wisdom that far exceeds her years. "I've carried those hurtful comments with me all my life but now I feel ready to leave the past behind and forgive and forget." And to Ricky, she's a hero. "The way Zara has handled things has been inspirational. I'm so proud of her—she means the world to me."
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