Hemel MP supports little Lexi who has rare condition that is turning her body to stone
Alex and Dave are continuing to raise awareness of the incredibly rare disease Fibrodysplasia Ossificans Progressiva
The MP for Hemel Hempstead has thrown his weight behind a call for dedicated funding into a rare condition that is turning a little girl's body 'to stone'.
Sir Mike Penning MP took part in a Parliamentary debate on Monday (December 6) to support the family of Lexi Robins, who has been diagnosed with the ultra-rare genetic condition, Fibrodysplasia Ossificans Progressiva (FOP).
Alex and Dave Robins - the parents of 11th-month-old Lexi from Hemel Hempstead - launched a petition in October, to help dedicate funding for research into the disease.
Funding is not currently available on the NHS.
FOP affects around 70 people in the UK, 14 of whom are children, and is caused by a single gene mutation.
The condition means Lexi, who was born on January 31, cannot have any injections, vaccinations or dental work and if her body receives even minor trauma (something as simple as falling over) her condition will worsen more rapidly.
This disorder gradually replaces muscle and connective tissue - such as tendons and ligaments - with bone.
This condition leads to bone formation outside the skeleton, extra-skeletal or bone, that restricts movement - many refer to this as their body turning to stone.
There is also a 50 per cent chance she could become deaf as the extra bone develops through her body up her neck.
There is currently no treatment, prevention or cure.
Alex and Dave, who are also parents to three-year-old Ronnie, have been raising awareness of the incredibly rare disease to help health experts and so other parents can look for any potential signs.
Lexi's mum Alex, used social media to highlight ‘Lexi’s story’ and her experience with FOP, which gained considerable traction for the petition, securing more than 33,000 followers and support from more than 40 celebrities and ensuring that the petition reached the crucial 100,000 signatories in a record time of eight days.
Alex said: “I really want to thank everyone for their support, and I am very hopeful for the future and efforts to try to cure this cruel condition.”
MPs from all parties backed the petition calling for more research, better support, and increased awareness in the medical profession.
A common sign in new-born babies is missing or severely turned-in big toes, but if not diagnosed, well-meaning medical interventions can make matters worse.
Responding to the debate, Minister for Patient Safety and Primary Care, Maria Caulfield MP, said: “The Government’s rare diseases framework that was published in January is the first of its kind and should reassure parents and children with FOP that this is an absolute priority.
"For too long, rare diseases, because numbers are low, have not had the significance, priority, and attention that more common diseases with lots of campaigners and patients have had.
"The framework will push this to the top of the agenda.
“The Government are committed to ensuring that all rare diseases get better access to the resources that are there.
"With particular regard to FOP, I am sure that we can work with colleagues across the House to deliver answers to some of the questions they have asked today.”
The family are preparing for Lexi's first Christmas her mum says she loves the lights and glitter.
Alex said: "Lexi is doing well, we are still waiting for the lumps on her neck to go down but she is doing really well.
"She is very happy and is getting her own personality, she is really coming into her own.
"The petition for funding is going really well and that's why we went to Parliament on Monday.
"We had an incredible debate and it could not have gone better. Everyone agreed that this needs sorting.
"We are hoping to have a three hour debate in the Spring and hopefully then we can find out more about funding.
"We will continue to raise awareness of Lexis story and FOP, and get more support from celebrities and MPs to back the campaign.
"Now that we have been to Parliament and discussed that, we can concentrate on Christmas, we are really looking forward to Lexi's first Christmas, she loves all the lights and glitter!"
"We will certainly be following up on the Minister’s offer to meet with families to improve support and work out how the researchers can make a successful funding bid.
"The FOP Friends charity – run by families of people with FOP – has done incredible work supporting families and raising money for research.
“The University of Oxford FOP research team is entirely funded by charitable donations – mostly from FOP Friends. It is totally wrong that the families have to raise the money themselves, it is time for the Government to step up on this.”
The charity FOP Friends was founded by Chris and Helen Bedford-Gay, whose son Oliver, now 14, was born with the condition. FOP Friends aims to raise funds that are needed to find effective treatments for the rare genetic condition.