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My name is Oliver and I am 11 years old. I am very energetic and love to run around and hang out with my friends. I have a bike and a scooter and sometimes you will even find me climbing a tree! I enjoy swimming and messing around in the pool. My hobbies are playing football, badminton, reading and trainspotting – I hope to become a train driver one day.   I like going on holidays and exploring new places.  I love being in Scouts and all the adventures that it brings.  I recently slept in a hammock in the rain!

When I was born, everyone was so excited.  My mum and dad tell me I was very cute! I looked completely healthy apart from my funny toes. The doctors didn’t know why they were like that, and they even tried to straighten them with special slippers. When I was just 13 months old, I was diagnosed with FOP.  My mum and dad’s world fell apart.

When I was about three months old, an unusual lump appeared on the back of my head.  Again, the doctors didn’t know what it was.  Since I hadn’t been diagnosed, at 9 months I had the lump removed.  We later learned I shouldn’t have done that.  But I was lucky and there was no FOP fall-out. But I have been lucky.  So far, FOP hasn’t really had a physical impact on me. If you didn’t see my toes, you might never know I was any different to you…

Even though I have been lucky and haven’t lost my mobility, I still have to live every day wondering if and when FOP will strike and some days that can be really tough for me and my family. I hope that very soon the researchers will find a treatment for FOP so I can continue to run and play like all my friends.