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Five-month-old baby ‘turning to stone’ due to rare disease

Five-month-old baby girl from the United Kingdom has a genetic disorder that turns muscles into bones. Lexi Robins was born on January 31 and looked like any other baby, except she didn’t move her thumb and had bigger toes. Her worried parents took her to the doctor. Lexi was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) in April. Her X-rays showed that she had bunions on her feet and double-jointed thumbs.

FOP can cause bone formation outside the skeleton and restrict movement. Muscles and connective tissues, such as tendons and ligaments, are believed to be replaced by bone. In other words, it is generally thought that this disease turns the body to 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. A minor trauma, such as falling over, can cause Lexi’s condition to worsen rapidly because of the disorder. She cannot receive injections, vaccinations, dental care, or give birth.

Her mother Alex said: ‘We were told, after the x-rays, that she likely had a syndrome and wouldn’t walk. We just didn’t believe that because she’s strong physically at the moment and just kicks her legs. She is absolutely brilliant. She sleeps through the night, she smiles and laughs constantly, and hardly ever cries. That’s how we would like to keep her’.

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According to reports, scientists are working to find a cure for the disorder using funds from a charity. Moreover, Alex and Lexi’s father Dave spoke to some experts, who said that there are active clinical trials that have been somewhat successful. Lexi’s parents have launched a fundraiser to help find a cure for Lexi. Additionally, they are running an awareness campaign for other parents whose children may suffer from similar conditions.


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