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.
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.
‘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.
‘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.
‘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.