Belfast Telegraph

Saturday 20 December 2014

'Human mannequin' battles odds

Louise Wedderburn is not letting her condition prevent her from pursuing a career in fashion (Murdo MacLeod/Channel 4/PA)
Louise Wedderburn is not letting her condition prevent her from pursuing a career in fashion (Murdo MacLeod/Channel 4/PA)

A teenager suffering from a rare genetic condition turning 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 has a rare genetic condition which 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 genetic disease which causes soft tissue to turn into bone, freezing her body permanently into place.

There have been just 700 confirmed cases of the rare disease 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 already defied the odds to attend her school prom and has now taken the first steps in a fashion career, doing work experience at London Fashion Week, then at Elle magazine.

Miss Wedderburn's story has been captured in Channel 4 documentary The Human Mannequin, which airs on Thursday night. "I wanted to raise awareness of FOP," she 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 the 19-year-old's illness has not affected her passion for fashion - she buys all the newest products and spends hours practising techniques and styles.

She got her dream when she secured work experience placements at London Fashion Week and Elle magazine, both recorded in the documentary.

Miss Wedderburn has to be accompanied at all times because of her limited mobility and also has to be careful in crowded places, as any bump could cause her body to lay down more excess bone, locking another joint. But she refused to be put off, saying: "If I start to think about things I would never leave the house."

Miss Wedderburn now plans to pursue her career however she can from home, including a fashion blog and her own styling and make-up business. There are also 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. "Of course I'm hopeful but I don't get all excited and think it's going to happen, because they could say three to five years but it could be longer."

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