26-years-old twin sisters are slowly turning to STONE

July 18, 2017  12:52

Twin sisters Zoe Buxton and Lucy Fretwell, 26, have a one-in-two-million genetic condition that is slowly turning them to stone.

The pair from Ballymena, Northern Ireland, are one of just three twins worldwide known to have a condition, called fibrodysplasia ossificans progressiva (FOP), which causes their muscle and tendons to be replaced by bone.

Although their future is uncertain, both women are determined to remain positive and are even considering having children despite the risk their condition may be passed on.

Ms Buxton said: 'We refuse to let our condition stop us from living life to the full.' 

Ms Fretwell added: 'It is difficult to stay positive, but it helps to have someone else going through the same thing as you.' 

Both found love  

When Ms Buxton, a fashion blogger, was 17 she met her now-husband Mike Buxton, 29, a gasman, online. 

She said: 'Mike's a selfless person, and he always puts me first.

'He understands that I get frustrated when it takes me an hour to get dressed in the morning, and he never complains.'

The couple married in 2012 and Ms Buxton chose to walk down the aisle instead of using her wheelchair, which she sometimes needs for long trips away from home. 

She said: 'Just because I have a disability, it didn't mean I couldn't enjoy the happiest day of my life.

'Mike and I would love to start a family, but there is a 50/50 chance that I'd pass on FOP to my child.

'He would rather me be alive and healthy than have an ill wife and child.'

Ms Fretwell, who looks after her older sister's children, met her now-fiancé Michael Smyth, 27, a teacher, in 2015, and the couple got engaged a year later. 

She said: 'When Michael proposed while we were on holiday last year, I was ecstatic. 

'I'd love kids one day, but it's not an option at the moment.

'We'd definitely consider adoption after we get married.'

'We'll never let our condition hold us back' 

While the twins try to think positively, their condition makes their future uncertain.

FOP typically worsens over time, meaning they are likely to lose more mobility.

Ms Buxton said: 'It's early days, and our injuries are irreversible.

'But we're both so positive about the future, and we refuse to let our condition stop us from living life to the full.'

Ms Fretwell added: 'It is difficult to stay positive, but it helps to have someone else going through the same thing as you.

'Sometimes I feel guilty that I have more mobility than Zoe.

'We support each other through the bad days and have also joined an awareness group to meet other people with FOP. 

'Zoe and I will always have each other and we'll never let our condition hold us back.'

The twins are taking part in trials for a new drug that might help their condition.

'Our parents tried to hide it from us' 

Ms Buxton and Ms Fretwell were diagnosed with FOP at eight years old.

Doctors did not initially detect their condition despite both women being born with small bony lumps on their toes; a common sign of FOP.

Ms Buxton said: 'When I was five, I fell off the sofa and broke my elbow.

'We thought it was a normal injury until the cast came off and I couldn't straighten my arm - it was agony if I tried.

'While we didn't know it then, the bone that had formed over the joint was a result of FOP.'

Ms Buxton learned to adapt to life with only one functioning arm, but concerned doctors carried on doing tests. 

Ms Fretwell said: 'When we were diagnosed, our parents tried to hide it from us. 

'We weren't allowed to ride bikes, roller skate or take PE lessons in case we got injured.'

Yet, despite their parents' caution, Ms Fretwell tripped over at school and hurt the back of her neck aged 11.

The resulting bone growth left her unable to raise her arms over her head.

In the same year, Ms Buxton broke her leg falling off a scooter and was unable to straighten it.

She said: 'After I broke my leg, I had to use a wheelchair.

'I hated it and it resulted in a lot of arguments with my parents.

'But luckily, everyone was always very supportive and we never had any nasty comments at school.'

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