Baby whose 'body is turning to stone' in race against time to fund miracle cure

·4-min read
Lexi Robins who suffers from super-rare condition Fibrodysplasia Ossificans Progressiva (FOP). (SWNS)
Lexi Robins who suffers from super-rare condition Fibrodysplasia Ossificans Progressiva (FOP). (SWNS)

A couple are facing a desperate "race against time" to fund a miracle cure for their baby girl whose body is "turning to stone" due to a rare genetic disorder.

Lexi Robins suffers from super-rare condition Fibrodysplasia Ossificans Progressiva (FOP), affecting just one in two million people and 48 people in the UK.

FOP causes bone formation on top of the main skeleton, restricting movement and slowly paralysing sufferers - effectively turning them "to stone".

Lexi's parents Alex, 29, and Dave, 38, from Hemel Hempsted, Hertfordshire, spotted an abnormality with their daughter's big toes just the day after she was born - but only had her diagnosis confirmed last week.

And now, they are in a "race against time" to continue funding a seven-year-long clinical trial for a miracle FOP cure that has the potential to stop the condition dead in its tracks.

Lexi with her parents Alex and Dave Robins, and older brother Ronnie.  (SWNS)
Lexi with her parents Alex and Dave Robins, and older brother Ronnie. (SWNS)

Events manager Alex says the research, at Oxford University, costs £150,000 a year to maintain - but that the three researchers working on it are "so close" to finalising the cure.

But the time scale at the moment for the small research team could be up to another three years - and Alex and Dave are desperate to save their daughter's life sooner.

Alex, also mum to three-year-old Ronnie, said: "It really is a race against time.

"At the moment, Lexi is doing brilliantly. It's just her thumbs and her toes that are affected - but I'm not going to let it get worse.

"She's so bubbly - she just laughs all day, and sleeps through the night. She's a little angel, we just want to keep her like that.

"The researchers have found that the cure they are working on could just stop FOP where it is, and make sure it doesn't get any worse.

"If we can get that into Lexi in the next couple of years, before she grows too much, she has a really good change at having a good, normal life."

Lexi Robins was born on January 31. (SWNS)
Lexi Robins was born on January 31. (SWNS)
The family on a trip to the beach. (SWNS)
The family on a trip to the beach. (SWNS)

But Alex and Dave have been told that for the team of three researchers currently working on the cure, it could be another three years before they finalise it.

And with the condition being so rare, there is currently no NHS funding to help with the research for the cure.

Alex added: "They're just working out some side effects at the moment, because at the moment there's a few side effects for children.

"But it seems so wild to me that it's down to the parents of children with this condition to help fundraise to keep the research going.

Lexi was born at Luton and Dunstable University Hospital on January 31 - after a straightforward pregnancy and birth for Alex.

The mum-of-two took her daughter home the same day - but returned to the hospital the following day after noticing Lexi's toes "didn't look right".

Lexi's parents are trying fund a miracle cure for their baby girl. (SWNS)
Lexi's parents are trying to fund a miracle cure for their baby girl. (SWNS)

Lexi had some x-rays taken in early March, which revealed that she was missing the top bone in each of her big toes, and that her thumbs were fused - meaning she had no knuckle in either thumb.

And after an agonising five-week wait, the couple were devastated to find out in June that Lexi did carry the gene mutation, and the tot was officially diagnosed with FOP.

The bone disorder, caused by a random mutation of genes, gradually replaces muscle and connective tissue with extra bones.

Determined mum Alex has now set up a fundraising page to continue to fund the research for the FOP cure - and hopefully help speed the process along for Lexi and other sufferers.

And Alex said it means "everything" to her and Dave that the page has raised an incredible £40,000 in just four days.

To donate to the fundraising page visit here

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