World / 5-month-old in UK 'turning to stone' due to rare condition affecting 1 in 2mn people

London: 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. Baby Lexi Robins has been diagnosed with an incurable condition that affects just one in two million people.

Lexi was born on January 31. Her parents, Alex and Dave from Hemel Hempstead, Hertfordshire, UK, noticed that she did not have much movement in her thumbs and that her big toes didn't look quite right. It took a while for the doctors to diagnose her with a life-limiting disease called Fibrodysplasia Ossificans Progressiva (FOP).

The condition replaces muscles and connective tissues, such as tendons and ligaments, with bone. The disorder can lead to bone formation outside the skeleton, prompting restricted movement. The condition is often compared to the body turning to stone.

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 HertsLive.

"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.

Lexi's tests were sent to a lab in Los Angeles which confirmed that she had tested positive for FOP.

"We're under the specialist of a top paediatrician in the UK and he said in his 30-year career he's never seen a case like this, that's how rare it is," dad Dave said.

The disorder also means that if Lexi's body receives a minor trauma, as simple as falling over, her condition will worsen swiftly. She cannot have any injections, vaccinations or dental work. She also cannot give birth.

"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," Alex said.

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

Alex and Dave have spoken to experts who said that there are active clinical trials that are proving to be somewhat of a success.

Lexi's parents have started a fundraiser for research on the disease to help find a cure and save Lexi's life.

"We want to be those parents who are trying to make a difference for Lexi and, on the back of that, trying to make a difference for any other parents who have to suffer such a cruel disease as well," Dave added.