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Hello my name is Millie I am 5 years old and I live in Framlingham Suffolk. I have a big brother Ethan and a baby sister Esther who I love to play with. I like going to school and playing with my friends, I just have to be more careful and try not to fall or bump myself. Everyone thinks I am a smiley little girl and I am determined to stay that way. I just want to play like all other children. Hopefully one day I won't have to ask mummy why I can't move like other boys and girls, because the researchers will have found a cure for me and my FOP friends.
We got the devastating diagnosis that Millie had FOP back in October 2013 when she was just 3 years old, something I thought we could never deal with. After time and support from FOP friends and the FOP community we do see hope but we need to continue raising awareness and fundraising to find that cure!