Dylan

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Hello, my name is Dylan and I live in Stirling, Scotland.  My mum says when I was born I had FOP toes but I wasn’t diagnosed until just after I started primary school, when I was five-years-old.

I had a few flares after that, mainly on my head, but it wasn't until a trip to Florida, when I was 10-years-old, that I had a major flare up involving both arms, shoulders and back. I had to give up learning the guitar then as my left arm locked.

When I started high school, I was put on a restricted timetable because FOP made it harder to do stuff and I tired easily.  There were also certain subjects I didn’t take part in like home economics and P E because I had 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 high school, I have had an electric wheelchair to help me get around 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 - something I don’t normally get to experience as someone with FOP.

Also I am a giant fan of sci-fi and comedy, I love watching Doctor Who (One year, I went to see the Doctor Who Symphonic Spectacular - it was so good!) and Still Game (a Scottish comedy show).  My sister Rachael wrote to the actors of the Still Game and arranged for me to meet them before their live show. We both had an fantastic time (see picture).   

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.

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