She’s 19 and suffers from a rare condition that locks her body into position. But nothing can stop Louise Wedderburn following her passion for fashion.

She has dubbed herself the “baking fashionista” and when not whipping up mouthwatering culinary treats, Louise Wedderburn can be found pouring over the pages of Vogue  and Elle in search of ideas for  her aspiring career as a stylist  and make-up artist.

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Yet Wedderburn, from Fraserburgh, Aberdeenshire, is far from your typical teenager, suffering from a rare genetic condition which is slowly turning her into a “human mannequin”.

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. Already both her arms  are locked in an immovable position, her spine similarly fused.

The 19-year-old's story was first documented in a Channel 4 programme shown in November.

Yet Ms Wedderburn refuses to be beaten and is determined to follow her dream of becoming a top-flight stylist and make-up artist.

Such is the rarity of the condition there have been just 700 confirmed cases of the disease worldwide and only 45 in the United Kingdom. With no  known cure, the life expectancy of those with  FOP is just 41.It could only be a handful of years before she is frozen in an upright position, requiring a standing wheelchair to get around. But Wedderburn refuses to be beaten and is battling against the odds to follow her dreams. This is her first modelling shoot.

How did your love of fashion begin?

I have always loved clothes, but my passion was properly sparked when I was 12. My older sister Samantha and I would read Elle and Vogue. We have four huge storage boxes at home filled with back issues.

Who are your biggest style icons or influences?

Coco Chanel, Alexander McQueen, Marchesa, the Olsens, Sarah Jessica Parker, Rachel Zoe and Daphne Guinness.

How would you describe your own style?

It changes on a daily basis. I have a bit of everything in my wardrobe. Today I’m in the mood for a pair of skinny jeans and a massive piece of knitwear because it’s freezing outside.

What is the most beloved item in  your wardrobe?

I’m getting more into classic and investment pieces. I have a black velvet Dolce & Gabbana prom dress that holds a special place in my heart.

Biggest fashion faux pas?

I went through a phase of wearing sky-blue eyeshadow. I’ve had every hair colour under the sun – pink, red, purple and black. Did  I seriously wear flares with platform trainers? Awful.

Who do you most admire within  the industry?

Lisa Eldridge, Beyonce, Nigella Lawson, Rachel Zoe, Victoria Beckham and the Duchess of Cambridge. They are all incredible women in both business and  style – and what I aspire to be like.

Does your condition pose any additional challenges in terms of following  your career?

Bone growth can happen at any time –  it’s not always necessarily because I’ve  been bumped into in a crowded place.  I can be sitting in the house and it can happen. My mum and friends tend to  get more worried than I do because  I know my limitations. Sometimes, though, I can push myself too far, but  I know when I need to hold back. If things are getting a bit much you will see me quietly go and take a minute. Then afterwards I get back into what I was doing.

It is believed a cure could be only three  to five years away. Are you optimistic  about that?

That would be amazing but I’m trying not  to get my hopes up. It could happen in that time frame or it could take longer. I’m confident of seeing a cure in my lifetime.

Do you have a motto?

If it doesn’t bother me, then it shouldn’t bother you.

What are your big passions away  from fashion?

I love to cook and to bake. My dishes tend  to be quite influenced by French cookery, which is something I’ve learned from my grandmother.

My mum’s home cooking has been  an inspiration too. Two of my favourite  dishes are lobster thermidor and apple  tarte tatin.

Tell us something not many people know about you?

I’m a Harry Potter obsessive. I was never much of a reader, but I started going to see the films with my sister and it all stemmed from there. I watch the DVDs over and  over again.

What does 2013 hold for you?

I have a new blog going live. I look forward to doing more work in fashion and lots  of baking.


Words: Susan Swarbrick

Styling: Carrie McAdam

Photographs: Kirsty Anderson