4-ft woman with rare disease becomes a dancer

Like many little girls, Tiffany Geigel dreamt of become a ballerina when she grew up.

But from the day she was born, she looked very different to her peers with her stunted stature, curved spine and short neck.

And not only did the New York native never fit the stereotypical image of a dancer, the malformations of her bones from a rare, genetic disease left her battling daily pain and breathing problems from her lungs being crushed.

You would understand if her parents let their daughter down gently, telling her a career as a dancer was not realistic and encouraging a different path.

However, instead, they told her, at age three, that she could be anything she wanted to be – and enrolled her in a dance class.

It was a move that has shaped and inspired Tiffany, now 32, to pursue her dream to be a professional dancer – despite being just four foot tall.

Tiffany Geigel has never let her physical disabilities stop her from pursuing a dance career

The New Yorker, 32, trains for 16 hours a week to hone her skills despite battling daily pain and breathing problems 

The New Yorker, 32, trains for 16 hours a week to hone her skills despite battling daily pain and breathing problems 

Yet Tiffany says it saddens her that she attracts cruel jibes and stares because of her condition – called Jarcho-Levin syndrome (JLS).

‘I was never bullied at school, the children were very accepting of me. It’s been as an adult I’ve experienced bullying.

‘Out on the streets in New York, strangers will stare and even laugh in my face. People will follow me taking photos or videos of me.

‘But dance is a way for me to say, “I can do this.” People laugh and stare but I’m living my dream.’

50-50 chance of survival

When Tiffany, from Brooklyn, was born with deformities, her parents, Lucy Colon and Carlos Geigel, were told by doctors she could have an operation.

JLS – which causes a shorter torso and fewer vertebrae – can bring on life-threatening breathing problems and recurrent lung infections, which can significantly reduce lifespan.

However, the family was warned that Tiffany faced a 50-50 chance of survival, and they opted against surgery.

The decision has never held her back. When she started dance lessons she took to it immediately. 

‘My mother very much had the attitude of “no-one will tell my daughter what she can and can’t do”‘ and that’s definitely rubbed off on me.

‘Luckily my dance tutors were really supportive and never treated me any different to the other children.

‘All I want to go on stage and do what I’m passionate about and have the audience forget that I look different or that I’m disabled.’

Tiffany has taught dance and is now also a freelance stage manager, having worked on many Off Broadway shows

Tiffany has taught dance and is now also a freelance stage manager, having worked on many Off Broadway shows

WHAT IS JARCHO-LEVIN SYNDROME? 

Jarcho-Levin syndrome is also known as spondylocostal dysostosis, a group of rare growth conditions characterized by abnormal development of bones in the spine and ribs. 

The bones of the spine (vertebrae) are misshapen and abnormally fused together. Many people with this condition have abnormal side-to-side curvature of the spine (scoliosis) and may have ribs also joined together or missing.

Affected individuals have short, rigid necks and short torsos because of the bone malformations. 

As a result, people with the disorder have short bodies but normal-length arms and legs, called short-trunk dwarfism. 

Severely affected individuals may have life-threatening pulmonary complications. 

Shows and TV debut

Now, in her own words, Tiffany says that dance has become a huge part of her life.

She achieved a bachelor’s degree in dance and is trained in ballet, pointe, tap, jazz, salsa, as well as Bollywood. 

After spending eight years teaching dance to children ages five to 18, she has gone on to perform as a professional dancer and is now also a freelance stage manager, having worked on many Off Broadway shows.

It’s a career that can see her training up to four days a week for four hours each time.

‘I am in daily pain but luckily my pain threshold is high,’ she explained. ‘I try not to take medication unless really necessary.

‘I come home with pains and aches, but I believe dancing has kept my body limber and healthy.

‘I know my limitations and if I’m finding it tough I will take a break.’ 

In 2009, Tiffany even appeared on season five of Fox TV show So You Think You Can Dance.

Next, she will be modelling for a new book that will be released in 2018. One day, she hopes to open her own dance studio.

An inspiration  

Tiffany says she hopes her story motivates others with disabilities to go after their dreams.

‘I’d never really thought about it before, but I do get a lot of feedback from other people with disabilities and parents of children with JLS, who are worried about their children.

‘I hope they look at me and see that whatever life throws at you, you can cope and make the best of it. 

‘I just wish people wouldn’t be so cruel when they point and stare. They don’t know when they’re doing that what I’m going through, if I’m in pain while they’re laughing.

‘I wish we lived in a world where people didn’t judge a book by it’s cover.’

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