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I was born a healthy baby boy aside from the deformed "big-toes" which years later we found were a characteristic of FOP. Until aged 5 I was "healthy" and out riding my BMX bike with my friends regularly.
Until aged 5 I was ‘healthy’ and out riding my BMX bike with my friends. My parents noticed my glands were swollen and being young and naïve I thought it was because I’d fallen over earlier that day. My parents took me to our GP the same day, upon a brief examination he told my parents he suspected I had contracted T.B, and referred us to a children’s hospital not far from where we lived in the South coast.
Whilst at the hospital, my condition began to quickly deteriorate; tests came back ‘negative’. I was on an extremely high dosage of steroids. My body and face began to swell and my arms locked, my parents where told to expect the worse.
Luckily, there was a visiting consultant who referred me to Great Ormond Street Hospital, and it was there I was diagnosed as having FOP. I spent around six weeks in hospital with my mum and a treatment plan was given to me.
Now I have severely restricted movement in my arms, neck, legs and my jaw began to fuse a day short of my 21st birthday!
Growing up with FOP, I felt like I was the only person with this condition. I only found out about ‘fop online’ whilst I was at college. This was when I got to know Julie (Rachel’s mum) and began to communicate with fellow fop’ers around the world too. I’ve made many amazing friends, some of whom also suffer with FOP and are truly inspirational people.
I’d like to make a special mention to my wonderful family. Parents are special, none more so than those with children with FOP. They are relentless in their love, care, support and dedication. I’m the middle child in my family, and I was blessed with FOP. I truly believe this, as I’m the mentally strong one out of my siblings.
I’ve realised that having a positive outlook helps, a smile can help mask the most painful of flare ups. Unfortunately, science isn’t something we can control yet – hopefully in the near future a cure can be found.