Who is Lexi Robins? Infant 'turning to stone' due to rare genetic condition

Lexi Robins, who is 5 months old, suffers from a rare genetic condition called Fibrodysplasia Ossificans Progressiva that turns muscles into bones


                            Who is Lexi Robins? Infant 'turning to stone' due to rare genetic condition
Representational image (Photo by OsakaWayne Studios/ Getty Images)

A five-month-old child from the UK is "turning to a stone" due to an extremely rare genetic condition that turns muscles and connective tissue into bones. Born on January 31, 2021, Lexi Robins' life has been fairly difficult so far, to say the least.

At the time of her birth, she had seemed like a normal baby, except she didn't move her thumb and had bigger toes. Her parents Alex and Dave from Hemel Hempstead were reportedly told that their daughter has a life-limiting disease called Fibrodysplasia Ossificans Progressiva (FOP). The dangerous condition affects just one in two million. 

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Who is Lexi Robins?

Lexi  Robins was born on January 31, 2021, to Alex and Dave Robins. She has an older brother, 3-year-old Ronnie. Lexi Robins suffers from a rare genetic condition called Fibrodysplasia Ossificans Progressiva (FOP), which can lead to bone formation outside the skeleton and restrict movement - the disease is reportedly is often likened to the body turning to stone.



 

For a while since her birth, Alex and Dave weren't sure what was happening with their newborn daughter till they decided to take her to the doctors. It took a while before Lexi was diagnosed with a life-limiting disease called Fibrodysplasia Ossificans Progressiva (FOP), which affects just one in two million. Exactly because of its rarity, it took doctors a while to diagnose her. 

As per the latest reports, Robins' X-rays from April, revealed that she had bunions on her feet and double-jointed thumbs. Shortly after Lexi was born on January 31, Alex and Dave noticed that her big toes didn't quite look right and that there was little movement in her thumbs.



 

"We were initially told, after the X-rays, she probably had a syndrome and wouldn't walk," said 29-year-old Alex. "We just didn't believe that because she's so strong physically at the moment and she's just kicking her legs. 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 then sent to a specialist lab in Los Angeles where they confirmed she had tested positive for FOP. "We then actually found out last Monday (June 14) the result of the FOP test," Alex continued. "The gene that they look for is the ACR1 gene, and that unfortunately is the gene that she has."



 

As per the latest reports, the FOP can lead to bone formation outside skeleton and restrict movement. It is believed to replace muscles and connective tissues, such as tendons and ligaments, with bone. People with this disease, which has no proven treatment, can be bedridden by the age of 20 and their life expectancy is around 40 years. Due to the disorder, Lexi's condition may worsen rapidly if she suffers any minor trauma, even something as simple as falling over. She also cannot receive injections, vaccinations and dental care and cannot give birth.



 

 

"We're under the specialist of a top paediatrician in the UK," added 38-year-old Dave said, adding, "and he said in his 30-year career he's never seen a case like this, that's how rare it is." Lexi's mother Alex added, "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."

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