“I was eight when I first noticed a lump in my neck. The doctor did tests and X-rays but when they came back he looked puzzled. ‘We’ve never seen this before,’ he said. ‘And we’ve got no idea what it is.’ But I wasn’t scared – I was too young to understand what was going on. Plus, apart from a sore neck,I didn’t feel unwell. “A week later I had more tests and the doctor told me I had FOP. Only 700 people in the world have it. Mum gave me a hug and told me not to worry. I wasn’t scared – just embarrassed at having to wear a neck brace at school. What have you done?’ my friends asked. ‘It’s a rare bone disease,’ I recited, but I didn’t understand how serious it was. In fact, at first I thought it was pretty cool. But when Mum told me I couldn’t play sports ever again incase I got injured, I was devastated. “I loved basketball, lacrosse and football – but now I sat on the sidelines enviously watching. I couldn’t ride a bike, or swim, or mess about with my brother Will, who’s only a year older than me. But I realised there was no point sitting around feeling sorry for myself. I started learning the trumpet to keep me busy, spending hours practising in my room. I loved it. “But, a year later, my right elbow started to become stiff. As I tried to play, it locked in a ‘L’ shape and I couldn’t reach the keys. I struggled for a few minutes, willing my elbow to bend, then gave up. I burst into tears. I began to understand that eventually everything I loved doing would be taken away. One by one my joints would seize up, until I couldn’t move at all. I suddenly felt so terrified I couldn’t breathe. “‘Why did this have to happen to me?’ I sobbed to Mum. ‘I know, it’s not fair,’ she said. But I knew crying wouldn’t change anything so I made a decision. Every time the disease stopped me from doing something, I’d find another way to do it. My elbow made it really hard to get dressed so Mum bought me along stick with a hook. I stood in front of my mirror and practised zipping up my jeans.
“There are only a few things I can’t find a way around – like putting my hair up – so Mum helps me. It’s frustrating, especially as all my friends are independent, but I don’t have a choice. “In December 2007 I slipped down some stairs at a party and, because I couldn’t grab the banister, smashed my head on the concrete floor. I was in a coma for a week – it made me realise how vulnerable I am, and how different to my friends. I want to go to college in a different city – so Mum has hired someone to help me live away from home. “I’ve never had a boyfriend. I wouldn’t ever be able to put my arms around a boy or slow dance with them, but I know that one day I’ll fall in love with someone who sees past my condition. “I’ve met other FOP sufferers, but I find it frightening to see the disease in more advanced stages. The average life expectancy is around 40, but some people live longer if the bone doesn’t crush their heart and lungs. I’m not in denial – but as I can’t stop what’s happening to me, I prefer to take each day as it comes.”
Sugar Magazine London June 2009