Twins turn to stone

Zoe and Lucy face an un­cer­tain fu­ture as their mus­cle tis­sue turns to bone

Woman’s Day (Australia) - - Contents -

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

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