A mother feels she is in a race against time to help save her 10-month old baby daughter , who has been diagnosed with a rare condition that turns her body to stone.
Lexi Robins, from Hemel Hempstead, was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP).
The genetic condition gradually replaces connective tissues, tendons, ligaments, and muscles with extraskeletal bone.
Those diagnosed with the condition essentially become a human statue with their body becoming frozen but their minds remain healthy.
Lexi is now at the stage in her life where she is learning to develop but her parents fear any slight knock or fall could cause a flare-up of FOP.
Once a bone has developed and movement is lost, there is currently no way to reverse the effect.
Lexi was born in January this year and her diagnosis was discovered after her parents noticed little movement in her thumbs and unusual big toes.
Due to the condition being rare, tests were conducted and sent to a specialist lab in Los Angeles where it revealed she had FOP.
Speaking to Herts Live , Lexi's mum Alex Robins said: "When she bangs herself, when she bangs a muscle, every single time there’s a chance that the FOP will flare up, especially if it’s on the joints.
“When it flares up, it calcifies into bone and will paralyse that joint. She could literally be walking all over, hit her knee and, a couple of days later, wake up and that leg will never work again. It’ll be paralysed.
“That’s the pressure and the worry we now have.”
No funding for treatment is available on the NHS and only a number of individuals at Oxford University are currently working on a cure.
The condition is thought to be one of the most debilitating that children can have in their early years.
Alex, 29, launched a petition to try to gain help from the government for her daughter and within eight days managed to gather over 100,000 signatures.
A number of MPs will now debate FOP in parliament tomorrow (December 6) at 4:30pm.
The three main calls for action during the debate are to increase research funding, to transform standards of patient care and to increase awareness and transform diagnosis.
Alex, who is also mum to three-year-old Ronnie, said: "I think it’s going to be the start of a new journey.
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“I think it’ll go into further discussions, and how can you get higher up than MPs in the House of Commons? The fact we’re there, talking to the right people, we’ve got heads turning.”
At present, fundraising money for research is only generated through parents of children with FOP, or those with FOP themselves.
Alex and her partner Dave, with the help of the wider community, have so far raised over £100,000 for FOP Friends.
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