Support Harry and his FOP diagnosis

Back in January this year we noticed a lump on Harry’s back. We went to the doctors and they weren’t sure so we got sent for ultrasounds, then MRI’s, then an ultrasound in London, followed by bloods for Harry, me and Phil. After all these tests and appointments we have recently had confirmation that Harry has an extremely rare genetic disorder called Fibrodysplasia Ossificans Progressiva “FOP”… you are most likely saying what in the world is that… and rightly so because so were we. Harry is 1 of about 70 people in the UK that has FOP and 1 in about 800 in the world known to have FOP.

FOP is cause by a mutation in the AVCR1 gene and is a crippling genetic disorder that will continue to get worse as he gets older.

Any bump, bruise or illness can lead to a flare up which will cause extra bone growth. As it progresses his body will turn muscles and tendons into bone building a 2nd skeleton making it hard for him to walk and move around. He already suffers from limited movement in his arms and a stiff neck from this.

As you can imagine this news was devastating and sort of turned our world upside down. To be told our happy little boy may be wheel chair bound, by the end of his 2nd decade of life, and that the life we pictured for his is going to look a lot different is something we never expected and have spent the last few months processing.

Currently there is no cure and very little treatments for FOP.

Phil and I want to support as many charities as possible that will provide our family with love and support with our new normal and this journey we have all started while also raising funds for Harry. These funds will, in the future, go towards adaptions we may need to make to our home, or move house which will be more appropriate for Harry’s needs, buy specialist equipment he may need, a wheelchair, aids to support him being independent and much more.

The charity we want to support first is FOP friends. Phil is going to embark on a 7.5 mile swim, end to end the length of Ullswater in the Lake District on July 12th.

FOPfriends is a charity run by an amazing couple who set it up when they discovered their son had FOP. This charity has been the biggest support to us since finding out about Harry’s FOP diagnosis and it will continue to support and guide us with our journey and for that we are so grateful.

Thank you for taking the time to read this and for all your support. It means more than you could imagine.

Harriet, Phil, Phoebe and Harry x