A Healthy Mind Inside a Frozen Body Living with FOP

FOP is the short name for a very rare and devastating disability which The Adamson Trust learned about for the first time in 2019. The Trustees were delighted to make a grant to FOP Friends, the charity based in Sale, Cheshire, which supports afflicted families and and the research into a treatment for Fibrodysplasia Ossificans Progressiva at the University of Oxford. There is at present no treatment or cure for this genetic condition which causes bone to form in muscles, tendons and other connective tissue, progressively imprisoning a person inside a second skeleton: a healthy mind inside a frozen body. It can steal a child’s independence overnight, just as they are developing it. However, there are a number of active clinical trials in progress and the families have real hope for a treatment in the next few years.

FOP Friends’s held their second family weekend at CentrerParcs in Sherwood Forest, for children with the condition, their parents and siblings.

For families living with this isolating disease, whose very rarity means they are geographically separated, this was an opportunity to catch up with each other in a relaxed atmosphere, surrounded by nature, friends, and adventurous activities. The families enjoyed a bowling session together, and an evening dinner brought everyone together and much fun was had with a a children’s entertainer. Most importantly, it was a chance to develop kinship which helps these families through their hardest days.

“An onlooker would not have believed the battles these children are fighting if they could have heard the laughter and seen the smiles,’’ said Helen Bedford-Gay, FOP Friends Trustee and mum to Oliver, age 12 who has FOP.

Among the 13 families in Sherwood Forest, some had met during FOP Friends’ first family weekend in 2017, and others were newcomers who found reassurance that they are no longer alone. Many of the families had already ‘met’ in online forums so this was a special time when they could actually meet and bond in real life.

“Although none of the families would have chosen this path, every family was there to make the best of their situation,’’ added Helen. “What is evident is that many of the families who do attend these events seem to be able to handle the brutality of FOP better than those who isolate themselves. However, for some people living with FOP, even the journey to a holiday is too much pain and discomfort: such is the reality of FOP.

Over the weekend, able bodied siblings helped children whose arms were already restricted. They sat together and talked, laughed, and played games. These relationships are real friendships, borne out of challenge, but the children truly feel a connection with each other. The children continue to build on these friendships, and this network will be invaluable as they move into the difficult teenage years and then on to adulthood. The charity’s hope is that by building these friendships early on, the children will be more resilient, less lonely and more able to cope as adults, issues that are all too real for many adults who are living with the condition.

“We are so very thankful that we have benefitted from the generosity of The Adamson Trust – a treasured gift to all our families.”