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News from Hertfordshire: Little girl diagnosed with rare disease that ‘turns body to stone’ | United Kingdom | New UK News


Lexi was diagnosed with a rare disease that “turns the body to stone.” (Image: family document / HertfordshireLive)

Little Lexi Robins won’t be able to have injections, vaccinations or dental care, and she will never have children, after finding out that she has Progressive ossifying fibrodysplasia (PFO) which affects one in two million people.

Shortly after Lexi was born on January 31, her parents Alex and Dave noticed that her big toes did not look good and that she had little movement in her thumbs. After months of testing and apprehension, Lexi was diagnosed with Progressive Ossifying Fibrodysplasia (PFO).

The fatal disease gradually replaces muscles and connective tissues, such as tendons and ligaments, with bones.

The disease can lead to bone formation outside the skeleton which restricts movement and is often equated with turning the body into stone.

Due to the rarity of FOP, doctors were slow to finally diagnose Lexi. Mum Alex, 29, told HertforshireLive: “We were first told that after the x-rays she probably had syndrome and would not walk.

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Lexi suffers from progressive ossifying fibrodysplasia (PFO) which affects one in two million people. (Image: family document / HertfordshireLive)

“We just couldn’t believe it because she’s so physically strong right now and just kicking herself in the legs.

“We weren’t quite sure, so we did our own research in mid-May, then we found this disease and we took it to the specialist.

“Towards the end of May, we had to have a genetic test and other x-rays, but the genetic test takes six weeks for the results.”

Lexi’s tests were sent to a specialized lab in Los Angeles where they confirmed she suffered from FOP.

FOP means that if Lexi’s body suffers even a minor trauma – something as simple as falling – her condition will quickly worsen.


Lexi with Alex, Dave and her brother Ronnie. (Image: family document / HertfordshireLive)

The condition means she can’t get any injections, vaccinations, or dental treatment, and she can’t have children either.

Any trauma to his body will eventually cause bumps that lead to additional bone growth, preventing it from moving.

Alex and Dave, who are also parents of three-year-old Ronnie, have found through their own research that there is a 50% chance that she will become deaf as extra bone grows in her body. and in his neck.

Alex continued, “She’s absolutely awesome. You almost couldn’t write it. She sleeps all night, she constantly smiles and laughs, hardly ever cries. This is how we want to keep it.


FOP is currently incurable. (Image: family document / HertfordshireLive)

FOP is so rare and currently incurable that Lexi’s parents hope awareness of the disease will help health experts and parents catch her earlier.

Dave, 38, said: “We are under the specialist of a leading UK pediatrician and he said in his 30 year career he has never seen a case like this – this is how rare it is. “

It is still unclear what causes the disease, and scientists working on the cure are only funded by the FOPFriends Charity, a charity that receives no funding from the NHS.

Upon learning that their daughter was suffering from an incurable disease, Alex and Dave found some solace in the online support network and within charitable groups.

Alex said: “There is a great community of other parents who have [children with] FOP and one of the parents started this charity called FOPFriends, and whatever they do they donate to research to try and hurry up.

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Lexi’s parents want to raise awareness. (Image: family document / HertfordshireLive)

“That’s our goal, to help them raise awareness and raise funds. It was absolutely heartbreaking, but we had their support.”

Alex and Dave discovered, after talking to experts, that there are active clinical trials that are proving to be somewhat successful.

Experts suspect that within the next two to three years, the drug will hopefully hit the market to help prevent and eventually cure FOP.

A fundraiser has been set up for donations to help find a cure for FOP. You can find more information and donate here.

Additional reporting by Adam May.

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This notice was published: 2021-07-01 11:03:31

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