My name is Millie, and I have FOP.
Family is so important to me – my mum, Chris, Ethan, Esther, Grandad, Nannie, Dad and all my aunts, uncles and cousins. My friends are important to me and FOP doctors and nurses are especially important. I hope the future brings a cure for FOP but I rather like riding in a wheelchair! When I move to high school, I hope people understand about me. Sports are difficult for me, but I don’t mind because I don’t like them! People like that I am funny and silly! I am kind and caring. Sometimes I need help to put my shirt on. I can’t ‘do’ my hair. I can’t walk too far. People think I’m brave coping with my illness – I only moan about it when I am in pain.
If people have a question about FOP please ask me. Don’t wrap me up in cotton wool.