Twin sisters with rare genetic condition will gradually be turned to ‘stone’

By Robyn Lucas
18 July 2017

It’s a rare genetic condition that only affects 800 people worldwide – and it will gradually turn their bodies to stone.

Zoe Buxton and Lucy Fretwell (26), suffer from Fibrodysplasia Ossifications Progressiva (FOP), which causes muscle tissue and tendons to be replaced by bones – and will slowly lessen the twins movement.

The Northern Ireland natives developed the condition from an early age and were both born with small bony lumps on their toes, a common sign of FOP – but doctors failed to pick it up.

“When I was five, I fell off the sofa and broke my elbow,” Zoe told Metro News.

After taking her cast off, she realised that she couldn’t straighten her arm properly and when she did attempt to – she’d be in complete agony.

“While we didn’t know it then, the bone that had formed over the joint was a result of FOP,” says the fashion blogger.

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The twins were diagnosed with the uncommon disease when they were eight years old but their parents decided to hide their diagnosis from them.

When Lucy was 11, she tripped while she was at school and broke her leg. She’s been unable to straighten it since then and has been using crutches to walk and uses a wheelchair when going on long trips.

Despite their condition, the pair are determined to live life to the fullest.

Zoe is excited to start a family with her husband, Mike Buxton (29), even though there is a 50 percent chance that their child might inherit the rare genetic condition.

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On the other hand, Lucy and Fiance Michael Smyth (27) will definitely consider adopting, as having children is not an option for them.

The sisters have not lost all hope as they are undergoing some clinical tests that might help with their condition – the two haven’t been experiencing bone growth since their treatment started.

“It’s early days, and our injuries are irreversible, says Lucy, “‘But we’re so positive about the future, and we refuse to let our condition stop us from living life to the full.”

Lucy admits to occasionally feeling guilty for having more mobility than Zoe, but maintains that she will always support her sister.

“We support each other through the bad days and have also joined an awareness group to meet other people with FOP,” Lucy says.

“Zoe and I will always have each other, and we’ll never let our condition hold us back.” she happily says.


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