A family from Hemel Hempstead say they have reached a “turning point” after their daughter Lexi’s ultra-rare genetic condition was debated live in Parliament last month.
11-month-old Lexi Robins has Fibrodysplasia Ossificans Progressiva (FOP), which is caused by a single gene mutation and only affects around 70 people in the UK, 14 of whom are children.
With FOP, 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 for FOP.
Lexi’s parents Alex and Dave Robins have tirelessly campaigned for funding into research and a cure since their daughter’s diagnosis with the condition a few months after being born.
A petition to dedicate funding for research into FOP was launched by the charity FOP Friends group and reached more than 100,000 signatures in record time. The topic was discussed in parliament on December 6, supported by Mike Penning MP.
Alex told HEMELNews: “We are very happy with how the debate went, we couldn’t have asked for more in terms of commitment from Mike Penning and how he represented Lexi and everyone else with FOP.”
In the parliamentary debate, Sir Mike Penning MP said: “This Government 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…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.”
MPs from all parties backed the petition calling for more research, better support, and increased awareness in the medical profession.
Alex added that the next steps are trying to secure a bigger, three-hour parliamentary debate in Spring and putting in a bid for funding.
FOP Friends’ founder, Chris Bedford-Gay said: “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. There are 3.5 million people living with a rare disease in the UK. Alone we are rare, together we are strong”.
Speaking after the debate, Sir Mike MP 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 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.”
You can follow Lexi’s journey by following ‘Lexi Robins Friends’ on Facebook.
To donate to Lexi’s fundraiser, please visit www.crowdfunder.co.uk/finding-a-cure-for-our-little-lexi