Fibrodysplasia Ossificans Progressiva

Mike Kane Excerpts

Monday 6th December 2021 Westminster Hall

[Mike Kane (Wythenshawe and Sale East) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Roger, and a real honour to follow the hon. Member for Carshalton and Wallington (Elliot Colburn), whose speech was exemplary. I thank him for leading this e-petition debate and I thank those who secured it. To get more than 100,000 signatures for something so rare is incredible. I also thank the right hon. Member for Hemel Hempstead (Sir Mike Penning), who leads admirably on this subject across the House. He has my full support on anything going forward.

[Sir Mike Penning (Hemel Hempstead) (Con)]

I will hold you to that.

[Mike Kane]

The right hon. Member heckles me: he will hold me to that, and so he should. He will not find me wanting.

It is a great honour to talk about FOP today. I am here on behalf of a young constituent, Oliver, who lives in my constituency of Wythenshawe and Sale East, with his brothers Leo and Harry and his mum and dad, Chris and Helen. I welcome Chris, who is here today in the Gallery, and thank him for taking the time to tell me about Oliver and how FOP has impacted their family life.

Oliver, who is now 14, was diagnosed with FOP in 2009. It impacts one in 2 million people. There are just 800 diagnosed cases in the world and only 50 in the UK. It is effectively a single letter that changes or mutates in the genome and over time results time in bone growth in muscles, ligaments and tendons. Usually, children are severely impacted by the time they are 10 years old. They are often contorted and immobile by the age of 20 and have an average life expectancy of around 40 years.

I have enjoyed hearing about Oliver and how he loves to read, play badminton and go to scouts, including to camp, where he slept in a hammock in the rain—not something I would do, but a mark of his extraordinary resilience. Oliver and his family really have shown resilience in the face of adversity, as do many families who suffer with the condition.

It is right for me also to pay tribute to the staff and pupils at Oliver’s school, Sale High in my constituency, who have given Oliver the opportunity to become more independent and to make friends on his own terms. They let him leave lessons shortly before the end of class—apart from history, where he insists on staying until the end because it is his favourite subject—so that he is not jostled in the corridor while moving from classroom to classroom. Those small adjustments give Oliver and his friends the opportunity to live as every 14-year-old should, with increasing independence and agency. May I place on record my personal thanks to Jayne O’Grady, who I know well as headteacher at Sale High School? She does a remarkable job, and I look forward to continuing to work with her to improve the fabric of that school, which is so desperately needed.

Oliver’s family and the wider FOP community have been phenomenal in their efforts to secure funding for FOP. The charity that they have set up, FOP Friends, is the only charity in the UK that focuses on research into the condition. It receives no Government funding at all. It is believed that advances in FOP research could have implications for more common bone conditions. If we know why bone forms in the way it does in FOP, researchers think that the same knowledge could be applied to people with limb damage and osteoporosis, and it could be helpful in cases of joint replacement. Developments made in FOP could eventually save the NHS money in care costs.

Although rare diseases are individually rare, within the population they are quite common, affecting one in 17 people at some point in their lifetime. The Government recognise the challenges faced by people affected by rare diseases, including ultra-rare conditions such as FOP, and in January 2020 they published the UK rare diseases framework, whose goal is,

“to help patients receive a final diagnosis faster”.

It also seeks to raise awareness of rare diseases among healthcare professionals. For example, there are only three doctors in the UK who have a specialist interest in FOP.

In summing up, I pay tribute to Oliver and ask if there is more that we can do to enable people like Oliver and others diagnosed with rare diseases in the UK to feel confident that we hear them and will support research into FOP, in line with the Government’s own framework.