Baby girl ‘turning to stone’ due to rare disease given fresh cure hope
Lexi Robins was born with Fibrodysplasia Ossificans Progressiva (FOP) – a disease that will eventually paralyse her – but her parents have found hope after a petition reached enough signatures to be considered by the Petitions Committee
The parents of a baby girl who is slowly being turned to stone have spoken of their joy after their petition for funding research into a cure surpassed the 100,000 signatures mark.
Lexi Robins was born with Fibrodysplasia Ossificans Progressiva (FOP) – a disease that slowly replaces the connective tissues, tendons, ligaments and muscles into extraskeletal bone.
The baby will eventually become paralysed.
It is thought that only about 80 people have been diagnosed with FOP in the UK, with 900 sufferers worldwide.
Parents Alex, 29, and Dave, 38, have revealed their petition with FOP Friends charity – surpassed the 100,000 signatures mark – and is set to be considered by the Petitions Committee when they return from recess.
Petitions that pass the 100,000 mark are not automatically debated, it needs to be considered by the committee – which is made up of backbench MPs.
The couple, of Hemel Hempstead, Herts, is hoping to get crucial research carried out by the NHS.
Alex said: “It would be absolutely incredible if we could get the funding, it would be life-changing for everyone with FOP.
“Lexi is very small and the condition develops throughout her body, so our race is to get this all moving and get a cure before it develops because at the moment she is completely able-bodied.”
Alex, who is also mum to Lexi’s older brother, added: “We’ve been fundraising, we have raised £120,000 and it costs £125,000 to keep the lab open for a year.
“It’s all going into an FOP lab in Oxford. All the parents have to try and fundraise and pay for that.
“There is nothing unfortunately that the NHS contributes so we’ve raised a petition to get it into the Houses of Parliament and get this changed and get funding through the NHS.
“We want to have resources put into this rare disease, and experts – because we don’t really have anything at the moment.”
The family’s petition has been backed by their local MP, Mike Penning.
Conservative Mr Penning said: “I want to help you if I can, obviously, because Alex and Dave, I know quite well.
“My constituency, I’m very proud to say, was the largest number of signatures to the petition in the country, which is great news.
“And they there now will be a debate, probably in Westminster Hall in the House of Commons on the subject of funding research into this, which I think is fantastic news.”
He added: “This disease is life-changing for the parents as well as for the children. And if we can get the research out there into finding out what’s causing it, if we can just find out what the cause was triggering this will be great news.
“I’m really proud of Alex and Dave – to pick this up and they run and they run and run and run with it because of their love of their children and other people’s children.”
Christopher Bedford-Gay, who founded FOP charity FOP friends, said: “Awareness of FOP is critical, and with over 100,000 signatures, one cannot argue that, even if the government chose not to fund FOP research, that awareness has been massively raised through Alex and Dave, and the FOP communities’ efforts.
“We can dream big, but if this effort leads to just one more early diagnosis, it will have been worth it!”