Lexi Robins Wiki – Lexi Robins Biography
Lexi Robins was born on January 31, 2021, to Alex and Dave Robins. She has an older brother, Ronnie, who is 3 years old. 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; It is reported that the disease is often compared to the body turning to stone.
For a time since her birth, Alex and Dave weren’t sure what was going on with her newborn daughter until they decided to take her to the doctor. It was a while before Lexi was diagnosed with a life-limiting disease called Fibrodysplasia Ossificans Progressiva (FOP), which affects only one in two million. Exactly because of her rarity, it took a while for doctors to diagnose her.
Lexi Robins Age
Lexi Robins is 5 months old.
Lexi Robins Health Condition
A five-month-old from the UK is “turning to stone” due to an extremely rare genetic condition that turns muscles and connective tissue into bone. Born on January 31, 2021, Lexi Robins’ life has been pretty rough thus far, to say the least.
At the time of her birth, she looked like a normal baby, except that she did not move her thumb and had larger toes. Her parents Alex and Dave from Hemel Hempstead were reportedly told that her daughter has a life-limiting disease called Fibrodysplasia Ossificans Progressiva (FOP). The dangerous condition affects only one in two million.
According to the latest reports, Robins’ April X-rays revealed that she had double-jointed bunions on her feet and thumbs. Shortly after Lexi was born on January 31, Alex and Dave noticed that her big toes didn’t look good and there was little movement in her thumbs.
“Initially we were told that after the X-rays, she probably had a syndrome and would not walk,” said Alex, 29. “We just didn’t believe that because she is very strong physically right now and is just kicking her legs. We weren’t very sure so we did our own research in mid-May and then we found this disease and took her to the specialist hospital.”
“Towards the end of May we had to do a genetic test, more X-rays, but the genetic test takes six weeks to get the results,” she said. Lexi’s tests were then sent to a specialized lab in Los Angeles, where they confirmed that she had tested positive for FOP. “Then we actually found out last Monday (June 14) the result of the FOP test,” Alex continued. “The gene they are looking for is the ACR1 gene and, unfortunately, it is the gene that she has.”
According to the latest reports, FOP can lead to bone formation outside the 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 can quickly worsen if she suffers some minor trauma, even something as simple as a fall. She also cannot receive injections, vaccinations or dental care and cannot give birth.
“We are under the expertise of a top-notch pediatrician in the UK,” added Dave, 38, adding, “and said that in his 30-year career he had never seen a case like this, that’s how rare it is. Alex, Lexi’s mother, added: “She is absolutely brilliant. She sleeps through the night, smiles and laughs constantly, she hardly ever cries. This is how we want to hold her back.”