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Hello,my name is Dylan and I live in Stirling and I’m 13. My mum says when I was born I had FOP toes but I wasn’t diagnosed until I was five just after I started primary school.
I had a few flares after that mainly on my head but after a trip to Florida when I was 10 I had a major flare up involving both arms, shoulders and back and I had to give up learning the guitar as my left arm locked.
Last year I started high school, and even though I enjoy it, because I have FOP I am on a restricted timetable because it is harder to do stuff and I tire easily. There are certain subjects I don’t take part in e.g home economics and P E due to my FOP I have to be careful not to get a bump and since my left arm locked I find it difficult to bend down so everyday tasks can be difficult for me. Since I started high school I also have an electric wheelchair to help me get around school and it's helpful to rest if I am in for a long day.
Outside of school I enjoy playing video games and going to the movies because I get a sense of escapism and freedom. That I don’t normally get being someone with FOP.
Also I am a giant fan of sci-fi and comedy, I love Doctor Who and Still Game (a Scottish comedy show) my sister Rachael (pictured below) wrote to the actors of the show and arranged for me to meet them before their live show. We both had an fantastic time. Later this year I am also going to see the Doctor Who Symphonic Spectacular.
As you can see I try to not let FOP bring me down and I try to live my life as normal as FOP lets me.