Originally published: 12 March 2013
For most people, the thought of her heartbreaking future would be terrifying – but Ashley, 31, refuses to be afraid, saying: “I’d rather create memories than dwell on what I’m losing. Doctors don’t know how much longer I’ll have movement – and, once my whole body locks, I may live like that into my seventies. I married at 20 and, although I divorced by 23, I’ve jet-skied and travelled.”
'Doctors don't know how much longer I'll have movement- and , once my whole body locks, I may live like that into my seventies'
Ashley was born with stone man syndrome (fibrodysplasia ossificans progressiva), which slowly fuses her muscles into solid bone. She’s lost movement in one leg, an arm, her back and neck and is unable to walk unaided.
The inspirational woman from Georgia, USA, is also an amputee. She was adopted as a baby – and born healthy – but aged two, her shoulder swelled and doctors diagnosed infantile fibromatosis – a form of cancer – and advised amputation to stop it spreading.
However, five months later, they found they’d made a mistake and the toddler was suffering with stone man syndrome – a hereditary condition caused by a genetic mutation, with just 700 known cases worldwide.
'She's lost movement in one leg, an arm, her back and neck and is unable to walk unaided'
Ashley, who understands why the mistake was made, says: “My parents were devastated, but I had a pretty normal childhood and went to school – although, I couldn’t do sports in case I bruised, which triggers swelling and speeds up muscle tightening.”
But conscious of her future, Ashley was determined to live life at full speed, saying: “I got a job in a video shop and went to an activity camp every summer.”
And when Ashley, who hasn’t been able to work in adulthood as she needs constant care, met her first boyfriend, Shawn, at 17, she married him just two years later. She says: “I was only young, but walking down the aisle was amazing. We had a great marriage – I was still fairly mobile then. It didn’t work out, but we ended on good terms when I was 23."
'We had a good marriage- I was still fairly mobile then. It didn't work out, but we ended on good terms when I was 23'
“The tightening in my body was gradual and not painful, so I adapted. But, by 23, my back had fused, which meant I couldn’t pick up things off the floor. Driving was difficult, too – I had to move my whole body to look left and right. But I stayed positive.”
But in May 2006, Ashley was in a car accident after a woman pulled out in front of her mum’s car. Ashley’s right leg got crushed and her muscles fused into a semi-bent position. She says: “It swelled and, after six months, began to freeze. It was excruciating. And, six months after that, it was almost rock solid. Initially, I felt so sorry for myself – I couldn’t walk without a cane and wore a shoe with a four-inch sole for balance. I barely went outside and felt trapped in my own body."
'I'd rather live a long life without movement than not at all'
But Ashley refused to be beaten. Explaining she lives with her mum, Carol, 66 – her full-time carer – she says:
“I started seeing friends and going out in a wheelchair. I can’t shower or dress and I need long brushes to do my make-up and clean my teeth as my hand can barely reach my chin. But I’ve learnt to surf lying down, jet-ski and have done a 5k race in my wheelchair. I’ve also become an ambassador for stone man syndrome to raise money for research and travelled the US. I’ve cruised the Caribbean – and met Tibetan leader Dalai Lama after a friend arranged it!
“I don’t know what will lock next – and when my jaw locks I’ll have to have teeth removed so I can get food in my mouth. But I hope to find love again. I’d like to study IT or web design, travel Australia and keep fund-raising to find a cure for my condition. I’d rather live a long life without movement than not at all.”