The living statue who refuses to give up: Woman, 31, on living with rare condition that slowly turns her muscles to bone and has already robbed her of one arm

  • Ashley Kurpiel, 31, suffers from Fibrodysplasia Ossificans Progressiva
  • Just 700 people worldwide have the illness which turns muscle to bone
  • She has already lost an arm and the movement in one leg to the condition
  • Nevertheless, she says she is lucky and is trying to live life to the full

By Ruth Styles

PUBLISHED: 09:15 EST, 29 September 2013 | UPDATED: 17:12 EST, 29 September 2013

With a Caribbean cruise with friends booked for November and a job she loves, Ashley Kurpiel, 31, considers herself lucky.

But the Essex-born naturalised American has struggled all her life with a condition that is slowly turning her muscles into solid bone - and has already cost her her right arm.

Now, the 31-year-old is hoping to experience as much of life as she can before her muscles seize up for good.

Brave: Ashley (right) is slowly losing her ability to move thanks to a disease turning her muscles into bone

Brave: Ashley (right) is slowly losing her ability to move thanks to a disease turning her muscles into bone

Ashley dressed as a pirate for a Halloween Party in October 2012.
Ashley in Orlando, Florida at an amputee conference held in June 2013, with friend Shawnie Whitaker.

Lucky: Ashley, who has already lost an arm to the condition, says she is happy her jaw hasn't locked

Ashley is one of an estimated 700 people worldwide with Fibrodysplasia Ossificans Progressiva (FOP), an incurable disease sometimes known as 'stone man syndrome' because its devastating effects can leave sufferers completely immobilised, like living statues.

 

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'My condition has made me who I am - an optimistic person with an inner strength and determination to succeed,' said Ashley.

'If I want to do something, then I normally find a way to do it. I don't know how much longer I will have movement in my body, so I want to experience as much as I can now.

'In other cases of FOP people have frozen solid, their jaws locking shut. They can't move and have to talk through their teeth long before they get to my age. So I actually feel extremely lucky.'

The condition arises from a mutation of the body's repair mechanism which causes muscles, tendons and ligaments to convert to bone material when damaged.

Ashley, whose mother Carol emigrated to Georgia from Hornchurch in Essex before she was born, was diagnosed with the condition when she was three years old - six months after her right arm was amputated by surgeons who wrongly suspected she had cancer.

Childhood: Ashley, pictured with her mother Carol, was initially diagnosed with cancer at the age of three

Childhood: Ashley, pictured with her mother Carol, was initially diagnosed with cancer at the age of three

Ambassador: Ashley now hopes to raise awareness of her condition and met the Dalai Lama in 2007

Ambassador: Ashley now hopes to raise awareness of her condition and met the Dalai Lama in 2007

'During my childhood my mobility was fine, because I was still young,' she added. 'But I was quite unhappy. I felt very different from the other children at school, and I didn't have many friends. I was quite shy and kept myself to myself. It wasn't much of a life.'

Her symptoms first began to show when she was a teenager, with gradual muscle stiffening accelerating as she grew older.

'I began to feel my body stiffen gradually. I knew I was finally facing the onset of the condition,' she remembers.

'I'd been told what was going to happen, and feeling the first symptoms made me want to experience everything life had to offer - before it was too late.'

She married Shawn Keeney, 31, a man she met online, but the pair divorced in 2005 after three years of marriage.

'I'm still on good terms with Shawn and I look back on our time together with nothing but fondness,' says Ashley.

 

Video source YouTube HitTheResetButton

Achievement: Ashley was able to complete a five kilometre surfing course using a specially adapted board

Achievement: Ashley was able to complete a five kilometre surfing course using a specially adapted board

Proud: Ashley wants to do as much as she possibly can before her ability to move is completely lost

Proud: Ashley wants to do as much as she possibly can before her ability to move is completely lost

'Walking down the aisle, with full use of my limbs, was one of the happiest days of my life, and no one can take that memory away from me.'

Despite her happy memories, in May 2006, Ashley's life took a turn for the worse after she was involved in a serious car crash.

She escaped without any broken bones but her right leg took a heavy impact.

'My doctor warned me that just the slightest bump could trigger the FOP to take hold. After the smash I fully expected my leg to freeze up permanently,' said Ashley.

'One of my worst fears was that my body would fuse upright, meaning I'd never be able to sit again.

'When my leg locked in a standing position I was sure I was facing a worst-case scenario. Luckily when the swelling went down I was able to bend the leg slightly.

'I spent a lot of time sitting in the hope it would fuse in that position. At least then I could sit in a wheelchair and be wheeled around.'

Her leg locked into a bent position permanently in May 2007, and Ashley was fitted with a special platform shoe to help her maintain as much mobility as possible.

Since the setback, Ashley has been determined to do more with her life and so far, has learned to surf and completed a five kilometre course in a specially-adapted wheelchair in August last year.

She has also become a full-time ambassador for amputees and families affected by the FOP and in December she is going on a Caribbean cruise with 100 friends who are amputees. 

'I've been blessed to meet so many truly amazing people, especially the Dalai Lama - that was a real honour,' said Ashley of the religious leader, whom she met in 2007.

'I feel so humbled that so many people have taken an interest, and hopefully found some inspiration, in my life.'

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it’s great she can still smile despite the challenges.

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Beautiful lady xx

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Some folks won’t get off the couch .

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Next time you feel sorry for yourself just think of this lady, that is a disability , that is courage, she is making the most of her life under very difficult circumstances yet is not feeling sorry for herself . Good Luck Ashley.

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Inspiring lady :)

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Next time we have a complaint or some pain, we should think of this poor, heroic, beautiful soul!!! Bless her!

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Sad but extremely moving and courageous.

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Shame, how very optimistic she is, she shows us all we should value every day more and do treat tomorrow as if its your last.

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Here I am feeling sorry for myself because of little things and this woman is pretty much turning to stone and is not complaining. Thank you Ashley for making me rethink my outlook, if you’re facing life with what you’ve been delt, than so can I.

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What a truly positive, inspiring lady. I wish her the very best of luck.

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