Rare Disease In 5-Month-Old Baby Girl That Turns Her Into Stone

Parents of a 5-month-old baby girl in the UK, recently diagnosed with a rare genetic disorder similar to body turning to stone are creating awareness about the condition and also raising funds for research to find its cure.

The parents of a five-month-old baby girl suffering from an extremely rare genetic condition turning her into stone are warning other families to look for potential signs.

Baby Lexi Robins born on January 31 to Alex and Dave couple from Hemel Hempstead, Hertfordshire, UK, is diagnosed with a life-limiting incurable disease called fibrodysplasia Ossificans Progressiva (FOP) that affects just one in two million people.

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‘A five-month-old baby girl from the UK is turning to stone due to an extremely rare genetic disorder called Fibrodysplasia Ossificans Progressiva.’

This condition replaces muscles and connective tissues with bone leading to bone formation outside the skeleton, prompting restricted movement. So, this disease is compared to the body turning to stone.

People suffering from FOP can be bedridden by the age of 20, and their life expectancy is around 40 years.

Initially X-rays taken in April month revealed that she had bunions on her feet and double-jointed thumbs. Later they did their research in mid-May and underwent a genetic test to discover this disease.

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"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.

Due to this disorder, her condition will worsen swiftly while receiving a minor trauma. She cannot have any injections, vaccinations, or dental work. She also cannot give birth.

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The condition of now has no cure as it makes it painful for Lexi's parents. While scientists are working on the cure, solely funded by the FOP Friends Charity, Alex and Dave have received immense support from other parents who have children with FOP.

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Source-Medindia