Twin sisters from Ballymena, County Antrim have spoke about life with a condition that is slowly turning them to stone.
Zoe Buxton and Lucy Fretwell (26) were diagnosed with fibrodysplasia ossificans progressiva (FOP) when they were eight - two of only 800 people in the world and only the third known set of twins.
FOP gradually turns muscle mass to bone and at the moment there is no cure.
“When I was 5, I fell off the sofa and broke my elbow,” Zoe recalled.
“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.”
As Zoe soldiered on with only one good arm doctors ran test after test, eventually diagnosing her and Lucy with FOP.
For some time however their parents hid the diagnosis from them, only insisting that the girls were extra careful whilst playing.
“When we were diagnosed, our parents tried to hide it from us,” Lucy explains.
“They just insisted that we were extra careful. We weren’t allowed to ride bikes, roller skate or take PE lessons in case we got injured.”
But amidst the rough and tumble of childhood the pair injured themselves seriously aged 11.
Lucy fell over, leaving her unable to raise her arms above shoulder height and Zoe badly broke her leg when she fell off her scooter.
“After I broke my leg, I had to use a wheelchair,” she said.
“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.”
While she was still at school she met her future husband, Mike, who she described as completely unfazed by her condition.
“Mike’s a selfless person, and he always puts me first,” she said.
“He understands that I get frustrated when it takes me an hour to get dressed in the morning, and he never complains.”
Although she sometimes uses a wheelchair, normally Zoe manages with crutches and she chose to walk down the aisle on her wedding day.
“Just because I have a disability, it didn’t mean I couldn’t enjoy the happiest day of my life.”
Lucy too has met the love of her life, also Michael, and the pair are set to wed next summer.
Both would like children someday but having FOP complicates things.
“Mike and I would love to start a family,” Zoe says.
“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.”
Lucy concurs and says she and Michael will, “definitely consider adoption after we get married.”
The sisters periodically head to London where they are participating in a new drug trial that could help them with bone growth but so far the results aren’t promising.
“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,” Lucy admits.
“We support each other through the bad days and have also joined an awareness group to meet other people with FOP.
“It helps to spend time with other sufferers because everyone knows what you’re going through.
“Zoe and I will always have each other, and we’ll never let our condition hold us back.”
Here is a short documentary about another person suffering from FOPs:
H/T: New York Post