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5-month-old baby girl in UK 'turning to stone' due to extremely rare condition

The parents of a five-month-old baby girl who is "turning to stone" due to an extremely rare genetic condition are warning other families to look for potential signs.

5-month-old baby girl in UK 'turning to stone' due to extremely rare condition-dnm
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London, First Published Jul 5, 2021, 10:21 AM IST
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A five-month-old baby girl in the United Kingdom has been diagnosed with an extremely rare genetic condition in which her tissues turn to bone. The genetic disorder called Fibrodysplasia Ossificans Progressiva (FOP) gradually replaces muscle and connective tissue, such as tendons and ligaments, with bone which leads to bone formation outside the skeleton restricting movement.

It is often likened to the body turning to stone, as per a report on Herts Live.

Lexi Robins was born on January 31 and seemed just like other babies except she did not move her thumb and her toes were larger than normal. Her parents, Alex and Dave took her to the doctors and after a while, she was diagnosed with Fibrodysplasia Ossificans Progressiva. It affects one in every 2 million people.

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

Lexi's X-rays, done in April, suggested that she had bunions on her feet and her thumbs were double-jointed.

"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 Herts Live.

"We weren't quite sure so we did our own research in mid-May and then we found this disease and we took it to the specialist. Towards the end of May, we had to go for a genetic test, further X-rays, but the genetic test takes six weeks for the results," she said.

The disorder also means that if Lexi's body receives even a minor trauma like falling over - her condition will worsen rapidly. Due to her condition she can't have any injections, vaccinations or dental work, and she also won't be able to have children.

The cause of the condition is unknown and scientists working on the cure are solely funded by the FOPFriends Charity, which receives no funding from the government. The parents have taken to social media to share her experience, and have received over £31,000 in donations in just three days.

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