Twins turn to stone
Zoe and Lucy face an uncertain future as their muscle tissue turns to bone
Zoe Buxton and her twin Lucy Fretwell are just like any other sisters. They love shopping for clothes and spending hours on the phone to each other every day.
But behind their beaming smiles, the 26-year-old twins face a bleak future. They were born with fibrodysplasia ossificans progressiva (FOP), a one-in-two million genetic condition, which causes their muscle tissue, ligaments and tendons to be replaced by bone.
Zoe’s left leg and both of her arms are permanently bent after extra bone froze the e joints in place. Lucy can’t lift her arms over her head after hurting the back of her neck.
Over time, the twins from Northern Ireland will lose more mobility. However, there is no known treatment and most sufferers aren’t expected to live past 40.
The first sign something wasn’t right was when Zoe broke her arm when she was five. “I had my arm in a cast for six weeks, but when it was removed I couldn’t straighten n it,” she explains. “Bone had fused around the break.”
It took three years of frequent hospital visits with their parents Avril, 53, and Ian, 52, for the girls to be diagnosed. The condition is so rare, it affects only 800 people worldwide.
Despite their debilitating condition, the twins are determined to live life to the fullest. Zoe was 17 when she met her husband Mike Buxton, 29, and they hit it off instantly. “He made me laugh, but I was still nervous about telling him,” Zoe says. “When I did, he said it didn’t matter to him.”
The couple married in 2012, and would love to start a family together. “But there’s a 50-50 chance I’d pass on FOP,” says Zoe. “It’s just not worth the risk.”
In 2015, Lucy met her fiance Michael Smyth, 27, and they got engaged the following year.
Both sisters know their future is uncertain, but bravely say having each other makes even the biggest battles a little bit easier. Zoe can’t straighten her left leg or aarms
The sisters are just one of three sets of twins in the world to suffer from FOP. Lucy can’t lift her arms over her head