A five-month-old baby girl from the United Kingdom is reportedly turning into a stone due to an extremely rare genetic condition that turns muscles into bones.
On January 31 Lexi Robins was born and seemed like any other normal baby but she couldn’t move her thumb and had bigger toes. This made her parents really scared and they took her to the doctors.
But it took a while before Lexi was diagnosed with a life-limiting disease called Fibrodysplasia Ossificans Progressiva (FOP), which affects just one in two million.
It was revealed from her X-Rays which were done in April that she had bunions on her feet and double-jointed thumbs. The FOP condition can lead to bone formation outside the skeleton and restrict movement. Hence, it is believed to replace muscles and connective tissues like tendons and ligaments, with bone that is generally perceived as the condition that turns the body into stone.
This disease has no proven treatment as of yet and people with this disease can be bedbound by the age of 20 and their life expectancy is around 40 years.
“We were initially told, after the x-rays, she probably had a syndrome and wouldn’t walk. We just didn’t believe that because she’s so strong physically at the moment and she’s just kicking her legs,” Lexi’s mother Alex told HertsLive.
Lexi’s condition may worsen rapidly if she suffers any minor trauma, as simple as falling over. Due to the disorder, she cannot receive injections, vaccinations and dental care and cannot give birth.
“She’s absolutely brilliant. She sleeps through the night, she smiles and laughs constantly, hardly ever cries. That’s the way we want to keep her,” she added.
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Reportedly, scientists are working, on the funds of a charity, to find a cure for the disorder. In fact, Alex and Lexi’s father Dave have spoken to some experts, who said that there are active clinical trials that have proven somewhat successful.
Lexi’s parents are running an awareness campaign to alert other parents whose children might have similar conditions. They have also started a fundraiser for research to find a cure for Lexi.