The Human Mannequin TX: 1 Nov 2012, Week 44
Teenager Louise Wedderburn has a rare genetic condition which is causing each of her joints to lock, as her muscle turns into bone. In spite of this she is determined to build a career in fashion. Will the notoriously image conscious fashion industry accept her, or will her extraordinary condition stand in her way?
Louise was born with an extremely rare condition called Fibrodysplasia Ossificans Progressiva - known as FOP - an unusual, progressive and ultimately terminal genetic disease, which causes soft tissue to turn into bone, freezing and stiffening her body into place permanently. The condition is extremely debilitating, often painful and in the past few years her limbs have become frozen and contorted, severely restricting her mobility. This intimate and inspiring film follows Louise on a remarkable journey from her hometown of Fraserburgh, Scotland, to the Fashion Capital of the UK - London, where she'll discover if she can balance the realities of her condition with the demands of the chaotic and image-obsessed fashion world.
Louise lives at home with her mum and sister, who between them provide the continuous care she needs to live with this devastating disease. Since puberty FOP has been slowly, locking her joints into place. FOP is extremely rare, affecting only 700 people worldwide and only 45 in the UK. There's currently no known cure although research scientists have recently managed to stop the condition progressing in mice. Due to the cruel nature of the condition, current life expectancy is just 41. As Louise's body continues to produce excess bone, it could be only a matter of years before she is permanently frozen in an upright position, requiring a standing wheelchair to get around. Despite these seemingly insurmountable limitations she remains upbeat, determined that she will not be defined by her FOP, nor let it dictate her life choices. As her mother and grandmother testify, Louise is resolute in pursuing a career in fashion no matter what physical discomfort it may bring her. She is determined to be accepted for who she is, "It's never going to stop me from doing what I want to do," says Louise smiling, " I don't want to be one of those people that let their illness get them down."
Louise's passion for fashion and make up started when she was a young teen and read fashion magazines when unable to attend school. Her interest has grown to the point where she voraciously buys the latest make-up products and spends hours everyday practising application techniques and new styles. Her wardrobe is filled to bursting with carefully selected high street and vintage clothes and she loves experimenting with new styles and looks. "I do wear quite eye-catching clothes," she says, "because I find it a good way to slightly detract from my condition. For the first five minutes ... it lets people see who I actually am." But is Louise's natural ability, passion and enthusiasm enough to form the basis of a professional career in fashion and style?
Life for this Scottish family is changing. Louise's big sister Samantha is getting married and leaving home which has prompted Louise to think about her own future. Louise's dream is to find a career the industry she loves and she's managed to secure work experience behind the scenes at London Fashion Week and a placement at the world-renowned woman's fashion magazine, Elle. Louise is incredibly excited and nervous at the possibilities that lie ahead. For her family, the happiness at seeing her realise her ambition is clouded by concern for her health. Louise has to be accompanied at all times as her mobility and agility are extremely limited and she has to be especially careful in crowded places. Any bump or knock could cause her body to lay down more excess bone which may, in turn, lock another joint - a worrying prospect in the chaos of working back stage at a fashion show. But Louise remains determined to pursue her dream despite being unsure how the image-obsessed fashion world will view her disability. She remains steadfast, "If I start to think about things I would never leave the house," she says.
First she heads to London Fashion Week. Because of her condition, Louise is unable to leave the house unaided so is accompanied by her sister Samantha. Designer Nadine Merabi from Manchester, a rising star in the fashion world, has agreed to let Louise help out at the hair and make-up trials that take place prior to her first ever London Fashion Week show the next day. With characteristic exuberance, Louise commits herself to the tasks she's asked to perform and impresses her new boss. She is given the job of checking that the models' hair, make-up and clothes are perfect just before they walk out onto the catwalk during the following night's show. Backstage at the show is hectic and her disability makes her vulnerable. Although Louise is experienced in knowing her limits and performs her role successfully, it is clear that she finds the experience extremely challenging and exhausting.
Back home in Scotland following her work experience, the effects of her hectic time in London have taken their toll. She feels drained of energy and, in this state, any movement is incredibly difficult. A visit to her specialist confirms the fears she's had of extra bone developing in her left leg, which is currently her strongest. But despite the hardships she endures daily, Louise never complains. "I don't really like to show my weakness...I've always been a strong independent person, always hated people feeling sorry for me because if it doesn't bother me it shouldn't bother you."
After the chaos of London Fashion Week, Louise hopes that the more office-based routine at Elle Magazine will suit her better. With her mother always on hand to help her with the daily realities of her condition, such as helping her to sit comfortably at her desk, Louise works enthusiastically alongside the beauty team, going out on to the streets spotting stylishly dressed Londoners to add to their website. Impressed by her obvious talent, the team task Louise with the challenge of writing up a piece about latest make-up trends. She is incredibly nervous but ecstatic when her hard work is rewarded and the piece appears on their website.
Louise's experiences in London have made her realize that the reality of living away from home is not possible. She needs the continuous support of her friends and family but can still pursue her dreams on her own terms. She decides to start a fashion blog and set up her own styling and make-up business. This allows her to reconcile the challenges of her condition with a career she loves: "I have to prove to myself that I can do it", says Louise.
Prod Co.: Nine Live Media
Prod. /Dir.: Pip Banyard
Exec Prod: Cat Lewis/Francine Shaw
Commissioning Editor: Gemma Brady
The film is a new commission from Channel 4's Education team who have a focus on life skills for young people.
Notes to editors
According to the FOP Action website - www.fopaction.co.uk - Fibrodysplasia Ossificans Progressiva or FOP affects 1 in 2 million people worldwide. FOP is a rare and distressing medical condition where bone forms in muscles and other soft tissues of the body. Whenever extra bone is formed across the joints it restricts movement. It is a progressive disease and there is no cure. FOP has no ethnic or religious pattern. There have been 700 confirmed cases across the globe from an estimated 2500. In the UK there are 45 known cases and in the US, 285 known cases.
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