How 'human mannequin' disease teenager Louise Wedderburn is battling the odds to become a model

view gallery VIEW GALLERY

 

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 despite being home-schooled for the majority of her education, 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, aired 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 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, as well as filling her wardrobe with the latest fashions.

"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," the 19-year-old said.

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

And she got her dream come true, securing work experience placements at London Fashion Week and Elle magazine, both recorded in the documentary.

The experiences were came with their own challenges - 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."

Sister Samantha, 21, accompanied her to fashion week where she joined designer Nadine Merabi, helping at hair and make-up trials then checking models' hair, make-up and clothes before they hit the catwalk.

At her placement at Elle, her mum Ciona, 44, also had to be on hand to help with practicalities like sitting comfortably at her desk.

Miss Wedderburn admitted the latter was easier for her because of the chaotic nature of being backstage at fashion week.

And she said she had been met with a positive reaction from everyone - which is not always the case. "People have all sorts of different reactions," she said.

"For some people it can take a lot for them to understand. You have to sit and explain it.

"But all my close family and friends are just like, 'you're normal, get on with it'. There's never been, 'you're different, you can't do this, you can't do that."'

She often sticks to the mantra: "if it doesn't bother me it shouldn't bother you", and is adamant that FOP will not stand in her way.

"If I think it's fine and I can manage to do it, I will do it," she added.

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 hoped 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."

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 then that will be amazing."

The Human Mannequin will air on Channel 4 tonight (Thursday) at 9pm.

PA

Life and Style
ebookNow available in paperback
ebooks
ebookA delicious collection of 50 meaty main courses
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
SPONSORED FEATURES

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Recruitment Genius: Software / Web Developer - ASP.NET

    £35000 - £45000 per annum: Recruitment Genius: This company produces a wide ra...

    Recruitment Genius: Office / Sales Manager

    £22000 - £32000 per annum: Recruitment Genius: Established and expanding South...

    Recruitment Genius: Administrative Assistant / Order Fulfilment

    £14000 per annum: Recruitment Genius: An exciting opportunity to join a thrivi...

    SThree: Trainee Recruitment Consultant

    £18000 - £23000 per annum + Uncapped OTE: SThree: Trainee Recruitment Consulta...

    Day In a Page

    Refugee crisis: David Cameron lowered the flag for the dead king of Saudi Arabia - will he do the same honour for little Aylan Kurdi?

    Cameron lowered the flag for the dead king of Saudi Arabia...

    But will he do the same honour for little Aylan Kurdi, asks Robert Fisk
    Our leaders lack courage in this refugee crisis. We are shamed by our European neighbours

    Our leaders lack courage in this refugee crisis. We are shamed by our European neighbours

    Humanity must be at the heart of politics, says Jeremy Corbyn
    Joe Biden's 'tease tour': Could the US Vice-President be testing the water for a presidential run?

    Joe Biden's 'tease tour'

    Could the US Vice-President be testing the water for a presidential run?
    Britain's 24-hour culture: With the 'leisured society' a distant dream we're working longer and less regular hours than ever

    Britain's 24-hour culture

    With the 'leisured society' a distant dream we're working longer and less regular hours than ever
    Diplomacy board game: Treachery is the way to win - which makes it just like the real thing

    The addictive nature of Diplomacy

    Bullying, betrayal, aggression – it may be just a board game, but the family that plays Diplomacy may never look at each other in the same way again
    Lady Chatterley's Lover: Racy underwear for fans of DH Lawrence's equally racy tome

    Fashion: Ooh, Lady Chatterley!

    Take inspiration from DH Lawrence's racy tome with equally racy underwear
    8 best children's clocks

    Tick-tock: 8 best children's clocks

    Whether you’re teaching them to tell the time or putting the finishing touches to a nursery, there’s a ticker for that
    Charlie Austin: Queens Park Rangers striker says ‘If the move is not right, I’m not going’

    Charlie Austin: ‘If the move is not right, I’m not going’

    After hitting 18 goals in the Premier League last season, the QPR striker was the great non-deal of transfer deadline day. But he says he'd preferred another shot at promotion
    Isis profits from destruction of antiquities by selling relics to dealers - and then blowing up the buildings they come from to conceal the evidence of looting

    How Isis profits from destruction of antiquities

    Robert Fisk on the terrorist group's manipulation of the market to increase the price of artefacts
    Labour leadership: Andy Burnham urges Jeremy Corbyn voters to think again in last-minute plea

    'If we lose touch we’ll end up with two decades of the Tories'

    In an exclusive interview, Andy Burnham urges Jeremy Corbyn voters to think again in last-minute plea
    Tunisia fears its Arab Spring could be reversed as the new regime becomes as intolerant of dissent as its predecessor

    The Arab Spring reversed

    Tunisian protesters fear that a new law will whitewash corrupt businessmen and officials, but they are finding that the new regime is becoming as intolerant of dissent as its predecessor
    King Arthur: Legendary figure was real and lived most of his life in Strathclyde, academic claims

    Academic claims King Arthur was real - and reveals where he lived

    Dr Andrew Breeze says the legendary figure did exist – but was a general, not a king
    Who is Oliver Bonas and how has he captured middle-class hearts?

    Who is Oliver Bonas?

    It's the first high-street store to pay its staff the living wage, and it saw out the recession in style
    Earth has 'lost more than half its trees' since humans first started cutting them down

    Axe-wielding Man fells half the world’s trees – leaving us just 422 each

    However, the number of trees may be eight times higher than previously thought
    60 years of Scalextric: Model cars are now stuffed with as much tech as real ones

    60 years of Scalextric

    Model cars are now stuffed with as much tech as real ones