Local MP Sir Mike Penning MP took part in a Parliamentary debate yesterday (Monday 6 December) to support the family of Lexi Robins who has recently been diagnosed with the ultra-rare genetic condition, Fibrodysplasia Ossificans Progressiva (FOP).

FOP affects around 70 people in the UK, 14 of whom are children, and is caused by a single gene mutation. The soft tissue in the body gradually turns into bone, slowly restricting mobility and eventually locking the body into a fixed, contorted position. There is currently no treatment, prevention or cure.

Sir Mike was contacted by Lexi’s parents Alex and David who live in Hemel Hempstead after a Parliamentary e-petition was launched to secure dedicated funding for research into FOP.

The petition was launched by the charity FOP Friends whose founders Chris and Helen Bedford-Gay’s son, Oliver now 14, was born with the condition.

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 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.”

She added:

“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.”

Speaking after the debate, Sir Mike said:

“I am pleased that the Government recognises the nature of FOP and the impact it has on these children’s lives and their families. 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.”

FOP Friends’ founder, Chris Bedford-Gay said that the group has been overwhelmed by local support:

“FOP Friends was set up as a charity following the diagnosis of our own child, Oliver. We never dreamt we would be debating in Parliament ways to change the lives of our small but strong FOP community and if we are lucky, the lives of many others living with rare diseases. If we can instigate real, meaningful change and support at governmental level it would be fantastic. There are 3.5 million people living with a rare disease in the UK. Alone we are rare, together we are strong”.