What is Fibrodysplasia Ossificans Progressiva? Five-Month-Old Baby Girl From UK ‘Turning to Stone’ as She Suffers From Rare Genetic Condition, FOP

A five-month-old baby girl Lexi Robins from the United Kingdom is "turning to a stone" as she is suffering from a rare disease that turns muscles into bones. It is an extremely rare genetic condition. Like any other normal baby, Lexi was born on January 31, 2021. However, she didn’t move her bigger toes and her thumb. According to the India Today report, Lexi’s worried parents took her to the doctors.

Later, the five-month-old baby girl was diagnosed with a rare disease that affects just one in two million. It is a life-limiting disease known as Fibrodysplasia Ossificans Progressiva (FOP). In the month of April, Lexi’s X-rays were done and it revealed that she had bunions on her double-jointed thumbs and on her feet. The rare disease can restrict movement and can also lead to bone formation outside the skeleton. The condition almost replaces connective tissues and muscles with bone. Thus, it turns a human body into stone.

There is no proven treatment available for this disease. The life expectancy of the people who are suffering from this rare condition is around 40 years and they can get bedridden by the age of 20.

If Lexi suffers from any minor trauma her condition may worsen. She can even receive dental care, vaccinations and injections due to the rare condition.

Lexi's mother Alex told HertsLive, "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.

"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," Lexi’s mother added.

Reportedly, on the funds of a charity, scientists are working to find a treatment for the disorder. For the research to find a cure for Lexi, her parents have started a fundraiser. To alert other parents about the rare disease, Lexi’s parents are also organising an awareness campaign.

(The above story first appeared on LatestLY on Jul 05, 2021 09:42 AM IST. For more news and updates on politics, world, sports, entertainment and lifestyle, log on to our website latestly.com).