Hi, my name is Charlie. I adore Marvel, DC and building Lego.  My hero is Spiderman and earlier this year I was lucky enough to meet the actor Tom Holland.

I have a really annoying older sister and an irritating younger cousin! I love them both despite how much they drive me crazy – maybe because they spoil me rotten!

I am just beginning my last year of GCSE’s at school and I am finding it really tough, my body aches as much as my brain and most days I struggle to get out of bed. I am fortunate to go to such a fantastic school where the teaching assistants are amazing, encouraging and supportive, if a little bossy. I spend some of my time encouraging and supporting younger students to fulfil their potential and take part in all school activities

I was diagnosed with FOP just before my 2nd birthday.  The doctors first noticed I had a stiff neck then they saw my malformed big toes.  FOP restricts my body but thankfully not my mind.  I love music and enjoy playing guitar and drums in my own way.  Mum, Dad and Sis often take me to concerts and festivals which I thoroughly enjoy.

Sometimes my FOP makes me really ill and I can’t do the things I love and that makes me really sad.  As a family we always focus on the things I can do and the resilience I have at finding alternative ways to achieve what I want to do.

Although hospitals are a big part of my life, my family and I endeavour to make the best of it.  We always twin the hospital visits with seeing the things I love in London and having an adventure.