Sir Mike Penning speaks in a Westminster Hall debate in support of a successful e-Petition that calls for more funding for ultra-rare condition fibrodysplasia ossificans progressiva, FOP after meeting his 10-month-old constituent Lexi who was recently diagnosed with FOP.
Sir Mike Penning (Hemel Hempstead) (Con)
I have served under your chairmanship for many years, Sir Roger, and it is a pleasure to do so again today. Many of us in this room are parents, grandparents or godparents to children. What is so amazing about the petition we are debating is how quickly over 100,000 people said, “We have to do something about this,” for such a rare condition. Petitions come and go, but we only have to look at the photographs to see what the condition does to human beings. We only have to Google FOP and look at the videos on Facebook and other sites to see the devastating effect it has on people’s life expectancies and on their loved ones.
For me, every child deserves the chance to have a childhood, but the condition—for all intents and purposes—removes that. It is a life-damaging, life-reducing condition that is so rare, as my colleagues have said, that very often when it is presented to top physicians and consultants with over 30 years of experience, they have never seen it before. In my constituents’ situation, when Alex and Dave first saw Lexi—they already had a lovely child, Ronnie, who is now three—they looked at the child, like we all do when we first see our grandchildren or children, and said, “There is something wrong.” When they said to the specialists that “There is something wrong with her feet”, they were told that she had bunions —she was a new-born child. Rightly, they questioned it. They questioned it and questioned it and, in the end, Lexi was probably the youngest child in this country to be diagnosed with FOP.
The family joined what is now FOP Friends, and that community has been formed to try to do two things. One thing is to understand how and why FOP progresses and how to stop that progression—I will come back to that in a second. The second thing is to try to understand for other parents how not to have a child with a genetic change at conception and to actually allow things to be addressed. That research is being done only in one place in the country, and that is Oxford University. It is purely funded by FOP Friends.
I have worked with colleagues in Pennsylvania and around the world on FOP, and we do not know how many children are born with FOP around the world.
They are born with it; it happens at conception. We do not really know how many children are born with it, because in other parts of the world they do not even understand what FOP is. There is a really dynamic specialist in America, who has worked with families over many years. In America, there are groups that come together from all over America. I saw a video of them barn dancing together only the other day. Many of them are frozen in their skeletons. I circulated some photographs to colleagues earlier on. Those photographs—for anybody who has a heart—are heartbreaking. An eight-year-old child in one of those photographs has a deformity in her spine, which is frightening for the parents.
What we need to do, perhaps, is say this to the Government, from across the House and across society. The Government are doing wonderful work. Governments have done wonderful work, but this Government in particular are doing wonderful work in the area of rare diseases and conditions. But this disease is so rare that it falls out the bottom. How can it be right, in this day and age, that we have to fundraise? There was a wonderful fundraising event done by my local football club, Hemel Hempstead Town football club, to raise money for research. That research will benefit the NHS and, as was said earlier, will have knock-on effects for other conditions, on how bone structure grows and how it does not grow, on why it grows and where it grows.
As a result of this condition, there is a child, my constituent, who is probably never going to crawl. She will probably walk before she crawls. She is never going to have that experience. Her parents will never have the experience of saying, “Where has she gone?”, which we have all had with our children when they have been crawling away and exploring life, because her neck is now starting to freeze, at 10 months of age.
What I would say to the Minister is this. We can go into great detail, as my colleague and hon. Friend the Member for Carshalton and Wallington (Elliot Colburn) did, about the different types of research. We can go into the different reasons as to why we cannot do it. I am sure the Minister will turn round and say, “Well, I can’t give a blank cheque, so let’s see what the research can produce.” But until we know how much money we have for the research, we cannot actually say what can be done.
There is a small group of us in this Chamber today. My hon. Friend the Member for South West Hertfordshire (Mr Mohindra) could not be here with us this afternoon, but I know he wanted to be. However, I have spoken to lots of colleagues across the House, and we are not going to go away. Of course, much depends on what the Minister says. She may shock us all and write a blank cheque, although I fully understand why she probably will not. But we do need some progress. We need to say that these children are so important. It does not matter if there is one in a million or 500 in a million. These children’s lives and their futures are important, and we need some progress so that they can possibly see some light at the end of the rainbow.
These parents are doing everything they can for their loved ones. Is it not about time that the Government, and we in Parliament, did everything we can for these children? By the way, I think we probably need to fill the House of Commons main Chamber in a debate on this subject, because the more people hear about it, understand it, see the photographs, see the distress and see children who had their childhood robbed from them when they were conceived, the more chance we might have of getting the money in the two areas where we need the research.