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Fashion-mad Seanie Nammock is spending the summer hanging out with friends and shopping for clothes on a well-earned break from her A-levels.

She never goes out without putting on her full make-up and dressing up to look her best. So to most observers she appears like any other attractive sixth-form girl.

But Seanie, 17, is suffering from a crippling genetic condition so rare that it affects only 45 people in the UK. Cruelly - it is slowly turning her into a living statue.

For five years she has been battling fibrodysplasia ossificans progressiva, known as FOP or stone man syndrome. It turns muscles, ligaments and tendons into solid bone. This forms a second skeleton on top of the original one, and each section of her body affected becomes solid like a statue.

Seanie's back and neck are frozen already, leaving her unable to lift her hands above her waist. She lives in fear of the awful condition getting worse.

Her mum Marian explains: "We dread the thought of her second skeleton spreading to the lower part of her body. She will have a life-changing decision to make about whether she wants to stay in a sitting-down or lyingdown position - because that's how she will be for the rest of her life."

Any kind of bump or blow to Seanie's body can trigger a painful growing spurt that adds to the second skeleton.

She says: "It doesn't help that I'm accident-prone.

I'm always falling up or down stairs because I can't hold the bannister.

"My balance is also a problem because of the way my arms are locked.

"I can't put them down either, to break my fall. So it can be really scary."

In the meantime she won't let the disease stop her living life to the full.

(Image: Collect)

For her school-leaving prom Seanie's perfectly applied make-up had to be put on with long-handled barbecue tongs because she can't get her hands close to her face.

And she looks after her own hair using brushes with extra-extended handles.

In fact Seanie always looks so pretty and poised that even some of her friends don't even know she has such a serious condition. And it didn't stop her passing 10 GCSEs, including five A grades.

Seanie says: "I just crack on with things, to be honest. There is no other option.

"It's taken me the last five years to get to the point where I'm able to push it at the back of my mind and just carry on.

"Before I was diagnosed, when I was 12, I used to play tag rugby and go to the gym five times a week.

"But there's no way I can do that any more so it's a good job I have got into make-up and more sedate pastimes."

Everyday life is constantly throwing up new challenges for Seanie. When she goes to the dentist she can't have painkilling injections because the trauma of having a needle pushed into her gums could spark an agonising growth spurt in her jaw.

She said: "People can't get their heads round what I have. The dentist admitted he had to go on Google to look up FOP to find out what it was. So I have to make sure I really look after my teeth.

"When I go in to have an X-ray they just don't know what they are looking at because of the extra skeleton.

"In fact you can tell the different layers apart because normal bone is clear white and the flare-up is more a grey colour."

Seanie's last painful flare-up came in April after she sprained her ankle on the stairs of the family's flat in West London.

"Overnight I had this sharp pain and then there was a golf ball-sized lump on the top of my foot. It's annoying because I can't get my shoes on unless I push it down, which I can do because it's loose."

There is no know cure for FOP and the only treatment available to Seanie is taking over-thecounter painkillers.

After a normal early childhood she developed a problem with her neck, which doctors decided to treat with steroids. Then in 2008, two weeks after she had fallen off a trampoline, she developed a large sore lump on her back that was hard, red and hot to the touch.

Marian took her to St Mary's Hospital in West London but doctors were unfamiliar with the symptoms and told her not to worry.

When the lump didn't clear and became even more painful, her mum took her to the Chelsea and Westminster Hospital where MRI scans and more tests led to the diagnosis of FOP, a condition that had been identified by scientists only two years earlier. Seanie says she wakes up every morning hoping a cure has been found.

The FOP Research Team battling towards a solution have no state funding, so Seanie and her family are trying to raise £120,000 for them.

Marian said: "They have found compounds that can stop bone growth but they need to carry on with research and trials.

Furious Seanie adds: "We get nothing from the Government, which really annoys me.

"If you get me started on that I will really have a right old rant, especially when I hear about girls getting boob jobs on the NHS or politicians and their spending sprees."

Marian says: "Seanie really feels it because like every girl her age it's all about self-image. She loves everything else a 17-year-old does. Even when she goes out to the shops she dresses up to the nines. She loves fashion and going up to the Westfield shopping centre.

"She likes to be independent, which is why some friends don't know she has FOP.

"She can walk but it's tiring because her balance is affected. She gets annoyed with me being overly protective but you can't help it.

"When we are out I am on the lookout for someone coming down the pavement on a skateboard or scooter just in case they crash into her." Seanie adds: "My friends and family have been an amazing support.

"The fact that they treat me like anyone else helps me just live my life like I want to.

"I don't like talking about it too much as I don't want people to immediately feel sorry for me before they get to know me."

On Thursday Seanie's sister Sinead sets off on a charity trek to Mount Kilimanjaro in Tanzania. She has already raised £32,000 towards the £120,000 target.

Sinead explains: "FOP is known as the 'mountain of all genetic diseases' so I thought what better way to attempt to conquer it than by setting out to scale the highest peak in Africa?" Seanie says: "I'm so proud of her and I know she's doing it for me. I appreciate it more than words can do justice.

"We need the money for the research. What we could really do with is a rich benefactor to donate the money to help find a cure."

She adds with a smile: "Either that or I could spend the money on make-up. I'd buy a Mac shop."