A five-month-old baby girl from the United Kingdom is “turning to a stone” due to an extremely rare genetic condition that turns muscles into bones. This girl child named Lexi was diagnosed with a life-limiting disease called Fibrodysplasia Ossificans Progressiva (FOP), which affects just one in two million.
About Lexi and her condition
Lexi Robins was born on January 31 and was perfectly fine like any other normal baby, except she didn’t move her thumb and had bigger toes than a usual new born does. Her concerned parents took her to doctor where they did an X-ray.
Her X-rays, done in April, revealed that she had bunions on her feet and double-jointed thumbs. And then she was diagnosed with FOP (Fibrodysplasia Ossificans Progressiva).
What is FOP?
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. Thus, it is generally perceived that the condition turns a body into stone.
People with this disease, which has no proven treatment, can be struck to bed by the age of 20 and their life expectancy is around 40 years or less.
FOP’s effect on Lexi
Due to the extreme rare disorder, Lexi’s condition may worsen rapidly if she suffers any minor trauma, as simple as falling over. She cannot take injections, vaccinations and dental care and also cannot give birth.
Lexi’s mother recently said that-
“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.”
Further adding she said that-
“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 parents are putting in lots of effort for their child
Alex and Lexi’s father Dave have had a conversation with some experts, who said that there are active clinical trials that have proven somewhat successful. Lexi’s parents have started a fundraiser for research to find a cure for Lexi. They are also running an awareness campaign to alert other parents whose children might have similar conditions.
Check out Lexi’s mother Alex’s post here
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According to reports and research, scientists are working, on the funds of a charity, to find a cure for the disorder.
How does Fibrodysplasia Ossificans Progressiva affect a human body?
In this case if the body of the diagnosed person receives even a minor trauma like falling over – their condition will tend to worsen rapidly.
1. Any trauma to their body will subsequently cause bumps which lead to extra bone growing, thus preventing the patient from moving.
2. Due to this condition they can’t have any injections, vaccinations or dental work, and in this disorder they also won’t be able to have children.
Scientists and parents come together for spreading awareness
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 but from the donations made through patrons. The parents have taken over social media too and have received over £31,000 from donations in just three days.