Four-foot performer with condition that makes her skeleton grow in a c-shape blows strangers away with incredible dancing
A four-foot performer with a condition that made her skeleton grow in a c-shape now blows strangers away with her incredible dancing.
Tiffany Geigel, 32, from Brooklyn in New York, USA, has Jarcho-Levin Syndrome (JLS) a bone growth disorder that meant her spine formed into a curve, making her torso shorter than average (3ft 9).
Since birth she’s been defying doctors’ expectations, with parents Luz Colon and Carlos Geigel, 51 and 52, being told she would die and to make the most of their time with her.
Due to the way her spine grew, she is only four-foot tall and despite her organs being compacted she has been declared one of the healthiest people with her condition.
She says the public treat her like a ‘freak’ often staring, trying to take pictures of her, laughing and cruelly making jokes about how she looks.
Tiffany, a professional dancer, believes performing from the age of five has helped her to retain mobility and flexibility.
She enjoys amazing crowds with her dancing talents as she believes it shatters strangers’ misconceptions about what she’s capable of doing.
Tiffany, a company dancer with Heidi Latsky Dance Company, said: “Dance has saved my life, it has helped me to continue being mobile and has kept my active and healthy.
“I didn’t expect to be able to professionally dance, I didn’t think the dance world would accept someone like me but I was hired because I’m very talented.
“I have crazy upper body strength, toned leg muscles, I’m very flexible and have great stamina.
“I’m technically trained in ballet, which is my first passion, but have done tap, Bollywood, contemporary and modern.
“When people see me perform they are blown away in awe, most of the time when people see me they automatically think I can’t do anything for myself – dance is my way of proving people wrong.
“In public, people can be ignorant and cruel, when I take the subway in rush-hour kids will laugh at me and make jokes, even adults try to take photos and videos of me.
“I’ve been told I’m a ‘freak’, to go ‘kill myself’, I ‘look like an alien’, that I scare’ people and my favourite, I’m the reason why ‘natural selection exists,’ it’s all really cruel, spiteful things.
“However, while I can’t control people’s stares in public, when I perform I know I can change their perceptions completely.
“People’s faces fall to the floor, I love that it’s such a shock to them and makes them feel stupid for their wrong perceptions about people with disabilities, you can never judge a book by its cover.
“I like to show off while dancing onstage, it’s where I can display how talented I am and that I can do anything you can do but probably do it
Jarcho-Levin Syndrome alters the way the spine and ribs grow, affecting approximately one in 200,000 people.
Due to doctors misunderstanding her condition, it was believed Tiffany wouldn’t survive and that she would be severely handicapped.
Tiffany said: “When I was born, my parents were told I would probably not survive and to enjoy the days they would have with me before I passed away.
“My spine is c-shaped so it never full straightened, doctors didn’t think I would walk or have any brain capacity but they were wrong.
“My parents raised me like any normal kid, I hit all of my milestones like any other child without problems and attended regular classes.”
Throughout her adult life, Tiffany says she prepares herself for interactions with the public who judge and treat her unfairly, rather than allowing her to educate them about JLS.
Tiffany said: “I have to leave the house with an angry face on, it’s my ‘don’t mess with me’ shield, it’s pretty exhausting not knowing if I’m going to get into a confrontation because people are cruel.
“I like when people come up to me and ask questions, because I can educate them and understandably people are curious.
“But if a person is laughing at me, taking a picture or other things, that’s when I have a problem because it’s such a heartless act.”
Tiffany, who has been declared on of the healthiest people with the skeletal disorder, maintains she cannot stand people pitying her as she loves her life.
She added: “I don’t know what it’s like not to have pain or to be able walk and see over the tops of people’s heads, but I don’t feel like I’m missing out.
“I don’t feel sorry for myself, I get sad looks from strangers but no one should feel bad for me, I’m not missing out, this is my life, I’m happy and don’t need people to pity me.”
She credits dance with transforming her from a shy, quiet girl into an empowered performer who regular defies people’s beliefs.
Tiffany said: “Dance has saved my life, if I wasn’t able to perform I don’t know what I would do or if I would be the same person I am today.
“Because there are so many preconceptions about what I can and can’t do, I have to show them with dance and when I do they are amazed.
“I hear people gasp and see they are speechless when I perform, they don’t believe I can do the things I do.
“Dance has definitely helped my mobility, stamina and strengthened the bones in my back and legs, as well as helping my life generally.”
To help shatter the false beliefs about JLS, Tiffany speaks to parents of children with the disorder and is releasing a photographic portfolio showing her malformations to the world.
Tiffany said: “But my body is marvellous at what it does, just like when a woman is pregnant and her body adjusts to the growth, my body did the same so I’m not restricted.
“I always tell parents who contact me to raise their child like any other and let them do activities, don’t keep them in a bubble.
“I was in dance classes from five years old and it has helped me to remain as flexible and capable of doing everything I can do today, thank goodness I’ve never had to use any adaptive device.”
To find out more visit: www.tiffanygeigel.com