Our child Oliver was the most beautiful baby when he was born, except he had funny toes. But we didn’t worry, why would we? Then when he was three months old, a strange lump appeared on the back of his head. Our consultants told us it wasn’t cancerous but because it was unusual, they would remove it. Again, we didn’t really worry. Then, just after Oliver’s first birthday we went to see Oliver’s consultant and he told us they had a diagnosis for us. He wrote three words on a piece of paper for us: fibrodysplasia ossificans progressiva. He tore it off and gave it to us. We were told that so long as he didn’t play rugby at school, he’d pretty much be ok. Still we didn’t worry. Then we went home and googled it, and our world fell apart: FOP, one of the most disabling conditions known to medicine with no treatment or cure. We were devastated. We had nowhere to turn, no one to talk to, no one seemed to know anything about it.
We found the IFOPA but there was no UK equivalent. We took some time to deal with the news and then decided we had to do something to support the research into a treatment. We couldn’t just sit back and let this happen to our little boy. Chris joined the Board of the IFOPA and we began to fundraise to support the research team at Oxford University. Over time, other families joined with us and FOP Friends was born as a registered charity. Our main aim was to offer support and information to new families: friendship in the darkest of days when you have been given those three devastating words. Whilst we couldn’t change the diagnosis for new parents, we could ensure that they didn’t feel alone on this journey.
Running a charity was never one our life goals, it was thrust upon us and we are still learning as we go. We take our inspiration from the community we support. We do some fundraising as a family, but the charity also offers support to others who fundraise for the charity. We pride ourselves on the personal touch, aiming to thank everyone who raises money and awareness for FOP Friends. When they donate to us, they really do make a difference and it is truly appreciated. People have organised fundraisers from grand events like running teams and gala dinners, to some of our younger friends getting sponsors to have their long hair cut or selling unwanted toys to make money to support their friend who has FOP. Our longest fundraiser is by Oliver’s grandma who has held line dancing evenings for Oliver for the past 8 years and has raised over £30,000 for research into FOP.
As well as coordinating fundraising efforts, we also help families who have just received the shattering news that their child has an incurable, progressive illness. Whilst we don’t have a magic wand, we can help them come to terms with the diagnosis in their own time. As the UK’s charity, we can connect the new parents to other parents who truly understand how they feel and with whom they can develop life-long friendships. Facebook has been a lifeline to families and opens a world of support and advice for parents of a rare child. We don’t have any medical expertise, but we do know the best people in the world who are experts in FOP. We can connect the new diagnoses to all these experts, and this is a great comfort to the families.
Perhaps our greatest achievement as a charity is our Conference and Family Gathering which we hold every two years. Last year was our third event, and the best one yet! It is attended by the world’s experts as well as the families and is a truly joyous and inspirational occasion. It means everything to the families and patients to be around others who understand. They can just feel comfortable around others without having to explain: they belong. Feedback we receive from attendees tells us we’re doing something right, as one researcher explained, “what [FOP Friends] put together was simply terrific… I hope that it could serve as a model for other organisations that deal with rare diseases and have a patient centric mission and focus…I feel honoured and lucky to have been a part of this”.
We have also started to arrange Family Weekends for our children with FOP. This is such an important event because the focus is wholly on fun and friendship. There is no science, no research; just a swimming pool, trees and the opportunity to connect with other families. Our first event was such a wonderful weekend with the children and parents alike wanting to go back. The next one is planned for spring this year and we can’t wait!
We are now in the fortunate position of having active clinical trials for patients with FOP, with that included children. The decision to give your child an unknown drug is huge for parents, balancing it against the risks of not doing anything at all. Our families are all desperate to find something that will help them, with many of them feeling optimistic with the trials available. As parents, we had to face the heart-breaking reality that Oliver would not be able to take part in the trial. Despite him wanting to take part, his abject fear of needles meant they couldn’t get the blood they needed. It was one of the most distressing things we’ve been through so far: we had to accept this was not going to be part of Oliver’s journey. Every day we count our blessings that the beast that is FOP has stayed quiet in Oliver: he has been physically unimpacted and lives a ‘normal’ life. But we know that our luck will run out one day, and that day could be tomorrow. We are living on borrowed time and a treatment that can keep our little boy, and all his FOP friends active, can’t come soon enough.
Until then we as a family, we as a charity, will continue do our best to change the future for those touched by FOP.
Helen and Chris Bedford-Gay. Oliver (10 with FOP), Leo (9), Harry(6).