Rare genetic disease is turning 5-month-old UK baby girl into stone
Baby turning to stone
A five-month-old baby girl, Lexi Robins,from the UK, is 'turning into stone' due to a rare genetic condition that turns muscles into bones.
Lexi Robins has been diagnosed with a rare genetic disease called Fibrodysplasia Ossificans Progressiva (FOP) which affects only one in two million people.
FOP is a life-limiting diseasethat results in bone formation outside the skeleton, limiting one's movements. It basically replaces muscles with bones, which in layman terms, changes the body into stone.
The tragedy was revealed by Lexi’s mother, Alexandra Robins, who explained that the couple was concerned when they noticed their daughter’s toes upon her birth, and after talking to the doctors, they realised that Lexi is suffering from FOP.
Due to this disease, Lexi will not be able to survive any minor trauma too, such as falling over. She will also not be able to ever receive injections or take dental care.
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Alexandra informed through an IGTV video that, as of now, there are 16 clinical trials going on for the treatment of this rare disease, of which two have been "extremely successful". One of the remaining 14 had to be stopped due to COVID-19 but will hopefully be soon resumed. Another clinical trial has been successful but is being tested for side effects at the moment.
The couple has taken to social media to request funding for FOP as the National Health Services (NHS) of the UK does not support any funding because it is a rare disease.