A five-month-old baby girl from the United Kingdom is “turning to a stone” due to an extremely rare genetic condition that turns muscles into bones.
Lexi Robins was born on January 31 and seemed like any other normal baby, except she didn’t move her thumb and had bigger toes.
Her concerned parents 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.
Her X-rays, done in April, revealed that she had bunions on her feet and double-jointed thumbs.
The FOP can lead to bone formation outside skeleton and restrict movement. It is believed to replace muscles and connective tissues, such as tendons and ligaments, with bone. Thus, it is generally perceived that the condition turns a body into stone.
People with this disease, which has no proven treatment, can be bedridden by the age of 20 and their life expectancy is around 40 years.
Due to the disorder, Lexi’s condition may worsen rapidly if she suffers any minor trauma, as simple as falling over. She cannot receive injections, vaccinations and dental care and cannot give birth.
“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.
“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.
Reportedly, scientists are working, on the funds of a charity, to find a cure for the disorder. Also, 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 have started a fundraiser for research to find a cure for Lexi. They are also running an awareness campaign to alert other parents whose children might have similar conditions.