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A five month old girl in the UK has been diagnosed with a very rare, incurable disease which “turns her body to stone”.
The young girl, Lexi Robins, has been diagnosed with a disease that affects only one in two million people worldwide.
Lexi appeared to be healthy from birth, but when her parents Alex and Dave Robins noticed a problem with her big toes, it led to the discovery that she had progressive fibrodysplasia ossifying (PFO).
About progressive ossifying fibrodysplasia
FOP can cause bone formation outside the skeleton and restrict movement. The genetic disease gradually replaces muscles and connective tissues, such as tendons and ligaments, with bones. Thus, it is generally seen that the condition turns a body to stone.
FOP effect
This means that if Lexi’s body experiences even a minor trauma – something as simple as falling – her condition will quickly worsen.
The disease leads people to be bedridden at the age of 20, while life expectancy is around 40 years.
The condition means she can’t get any injections, vaccinations, or dental care, and she won’t be able to have children either.
Lexi’s x-rays, taken in April, suggested she had bunions on her feet and her thumbs were double-jointed.
“We were first told that after the x-rays she probably had syndrome and wasn’t walking. We just didn’t believe it because she’s so physically strong right now and just doing that. bumping her legs, “Lexi’s mom Alex said to HertsLive.
“She’s absolutely awesome. She sleeps all night, she smiles and laughs constantly, hardly ever cries. That’s how we want to keep her,” she added.
Lexi’s parents have started a fundraiser to find a cure for Lexi. They are also running an awareness campaign to alert other parents whose children may have similar conditions.
“We want to be those parents who are trying to make a difference for Lexi and, on the back of that, who are trying to make a difference for all the other parents who must also be suffering from such a cruel disease,” said the father of Lexi, Dave.
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