Thirteen-year-old Zara Hartshorn has a rare genetic condition that makes her look much, much older than her years. She has the face of a grown woman, gaunt and wrinkled. But she's a frightened teen inside.
Zara Hartshorn has been robbed of her childhood. Her mom took her out of school because the bullying was so bad. A bus driver laughed in her face recently when she tried to pay the child's fare. Strangers stare and point in the street. Kids call her "grandma," "monkey" and "baggy face."
Zara is 13 but has a rare genetic condition that makes her look much, much older than her years. She has the face of a grown woman, gaunt and wrinkled. But she's a frightened teen inside.This disease affects only about 2000 people on the planet
"It feels like people are looking down their noses at me and staring," she said at her home in northern England. "You know when you get that feeling you're being watched? I feel that everywhere I go."
Zara's mother, Tracey Pollard, feels her pain: She, too, was born with lipodystrophy.
Pollard, 41, noticed the tell-tale signs in Zara's face at birth. "I was grieving for a child that's got to go through the same things in life that I've had to go through," she said. "I was angry at myself for actually having Zara."
Lipodystrophy is a genetic disease. It is hereditary. It robs the body of the ability to produce fat cells beneath the skin.
"Fatty tissue doesn't grow right," Dr. Donald Kotler of St. Luke's Roosevelt Hospital in New York City said. "Normal fatty tissues shrink, making people look sort of old and wrinkled and abnormal."
Lipodystrophy can also bring on diabetes and, later in life, heart disease, stroke and liver problems.
There is no cure for lipodystrophy. "What you're left trying to do is to manage it," Kotler said. "It's bad enough in an adult, but I would think for a child it would be devastating."
Pollard's first child, Gareth, was born healthy. So Tracey thought her kids would be safe. Two of her younger children showed only very mild symptoms. Then Zara, the youngest, was born.
When asked what she feels when she sees her own face in the mirror, Zara said, "I don't like it. Sometimes I'll sit in my room and start pulling my skin back, stuff like that. Most teenagers worry about getting spots. ... I'm worried about surgery and stuff like that and when's bullying going to stop."
Zara lives at home with her mom, sisters and a brother. There is, of course, the usual rough-and-tumble and sibling bickering one would expect in a large family. But, Zara said, she feels safe and loved. No one makes fun of her, unlike every time she steps outside her front door, where she's scared.
Zara was, she said, a confident little girl. Then at age 5, the bullying started. "The kids started calling me names," she said.
Zara went home in tears. "I asked my mom why I was different," she said.
As she grows older, Zara's anxiety has increased. She lives in Rotherham, South Yorkshire, in a hardscrabble, deprived neighborhood. Life here is tough. For her, it's tougher.
"I want a face-lift," she said.
Her mother had surgery when she was a teenager in an effort to smooth her wrinkled face. But, Pollard said, it didn't help much. "My expectations were too high," she said. "I thought I would look like a normal kid ... but I didn't."
Her appearance has had a huge impact on her life, she said. She has low self-esteem, has never had a career and has suffered a string of abusive relationships.
"I don't want [Zara] ending up like me," she said. "Surrounding herself with seven, eight or however many kids just to feel loved. ... And she doesn't need to go from one man to another looking for something she'll never find."
When she's older, Zara said, she wants to be a beauty therapist. Her mother, a single parent who lives on benefits, is supportive.
"You always have hope and your dreams," Pollard said. "No one can take that away from you no matter how bad they treat you."
For now, Zara's dream, she said, is to walk down the street without people staring at her, to feel young again.