‘Human mannequin’ defies crippling disease for career in fashion

By ELLEN BRANAGH
Published on 01/11/2012 10:31

A TEENAGER suffering from a rare genetic condition which has turned her into a “human mannequin” has refused to be beaten by her disease and is battling against the odds to pursue her dream career in fashion.

Louise Wedderburn’s illness causes each of her joints to lock as the muscle turns into bone.

The 19-year-old was born with fibrodysplasia ossificans progressiva (FOP), a disease which causes soft tissue to turn into bone, freezing her body permanently into place.

There have been just 700 confirmed cases of this worldwide and only 45 in the UK.

With no known cure, the life expectancy of those with FOP is just 41. It could only be a matter of years before Miss Wedderburn is frozen in an upright position, needing a standing wheelchair to get around.

But the teenager, from Fraserburgh in Aberdeenshire, insists: “It’s never going to stop me from doing what I want to do.”

She has already defied the odds to attend her school prom, despite being home-schooled for the majority of her education, and has now taken the first steps in a fashion career, with placements at London Fashion Week then at Elle magazine.

Miss Wedderburn’s story has been captured in Channel 4 documentary The Human 
Mannequin, which will be broadcast tonight.

“I wanted to raise awareness of FOP,” Miss Wedderburn said. “Obviously, in our community everybody knows about it because of me, but it’s not as well- known as some other conditions.”

Diagnosed at the age of three, it was when she hit puberty that the condition took hold. Both her arms are locked in place and her spine is frozen.

But Miss Wedderburn’s illness has not affected her ambitions to work in the fashion industry.

“My mum and granny were always well dressed. My mum used to dress us up in the biggest, frilliest dresses ever and, having older sisters, I was always into clothes,” she said.

“I just love all of that. I would love to either be a stylist or a make-up artist or work for something like Elle.”

Miss Wedderburn has to be accompanied at all times because of her limited mobility and also has to be careful in crowds, as any bump could cause her body to lay down more excess bone, locking another joint.

Sister Samantha, 21, joined her at Fashion Week where she worked with designer Nadine Merabi, helping at hair and make-up trials

There are hopes for a cure for FOP after research scientists recently managed to stop it progressing in mice.

“The last time I heard, any cure could be about three to five years off,” Miss Wedderburn added.

But she refuses to fear the future – either the possibility of not living past her 40s, or being locked into one position.

“It doesn’t actually scare me because I don’t think about it. If it happens, it happens, and if they find a cure that will be amazing,” she said.

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