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Hemel Hempstead mum promised funding into daughter's rare FOP illness

Alex Robins David, Lexi and Alex Robins outside 10 Downing StreetAlex Robins
Alex, David and Lexi Robins handed in their official debate requests into 10 Downing Street

A mother of a two-year-old girl with an illness that turns muscle into bone says she "feels heard" after the government said it will fund research.

Lexi, of Hemel Hempstead, has the very rare condition Fibrodysplasia Ossificans Progressiva (FOP).

Her mother Alex Robins said it was a "massive win" after the subject was discussed in Parliament.

She hopes the funding will be used to find a cure for the condition that affects about one in a million people.

Alex Robins Lexi RobinsAlex Robins
There is very limited research into Lexi's condition

Mrs Robins, from Hertfordshire, said she started her own research into the condition after she noticed shortly after Lexi was born her "big toe was bent inwards".

She was told it was "bunions, which I didn't believe".

After genetic testing, it was confirmed Lexi had FOP and that the condition had "limited research worldwide".

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What is Fibrodysplasia Ossificans Progressiva (FOP)?

  • FOP is a very rare inherited connective tissue disorder that was first identified in the 18th Century
  • There are about 900 known patients and about 4,000 people thought to have the condition globally
  • The disorder affects males and females equally and all ethnicities

Source: National Organisation for Rare Disorders

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The family raised hundreds of thousands in cash to fund research and set up a petition aimed to get the matter discussed in parliament, which happened in December 2021.

Mrs Robins said the government promising to fund research was "a massive win for us".

"We're extremely happy, we were surprised at how helpful, kind and compassionate the team were who attended the debate and they had clearly done their research.

"We felt heard, we now just want to use the funding to carry on the research into finding a prevention and cure, and help other people further down the line like us."

Alex Robins Lexi with Larry the cat at 10 Downing StreetAlex Robins
One of the highlights for Lexi on her London trip was meeting Larry the cat outside 10 Downing Street

Sir Mike Penning, the Conservative MP for Hemel Hempstead, who has supported the family said: "This debate opens doors to health minsters and science minsters so trials could begin again."

He said one trial into the benefits of the drug Saracatinib, an inhibitor, were paused due to the Covid-19 pandemic.

"We haven't won the war for the families, we've won the skirmish," he said.

Alex Robins Jon Mole with Alex, Lexi and Dave Robins, with Chris Bedford-Gay, his son Oliver and Sir Mike PenningAlex Robins
The Robins family were joined by Chris Bedford-Gay, the chairman of FOP Action, his 15-year-old son Oliver (centre right), who has FOP, Sir Mike Penning (far right) and Jon Mole (left)

Will Quince, the Minister Of State for Health and Social Care, said further meetings would be needed.

"I genuinely believe that together we will continue to strive for progress and awareness, and support those living with FOP", he told the commons.

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