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 at the time.
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.
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. Some that are sadly no longer with us.
Now I have severely restricted movement in my arms, neck, legs, my jaw, pretty much head to toe is affected. My jaw began to fuse a day short of my 21st birthday!
In April 2019, I was walking onto my bathroom mat after showering and there was a loud ‘snap’ sound. I broke the 3rd and 4th metatarsals in my left foot.
Due to the complexities associated with having FOP, I ended up bed bound for three months. It’s been a long, physically and emotionally draining battle but I’m happy to report I’m on my feet and walking again.
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 have brilliant friends and a truly supportive and amazingly caring care team. I like to socialise with my friends whether it’s at home, going for a drive in my van with family, or going for lunch. I enjoy going to bingo sometimes, it’s a good laugh.
My best friend Max deserves a special mention, she’s been a tower of strength in the time I’ve known her. We share a lot of laughter and love. I couldn’t imagine my life without her.
A big thank you to Chris and Helen for their tireless efforts in raising awareness and for all the work the team do at FOP FRIENDS.
Over the years, I’ve realised life is what you make of it. At times, FOP can throw obstacles in the way but it’s about how you deal with these challenges and finding different ways to safely achieve a task.
I’ve been fortunate to have gone abroad many times before losing the ability to sit down on conventional seating nearly 23 years ago.
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.
Please donate or support this worthy cause so that a cure can be found and children in the future dont have to experience such a painful and debilitating disease. Thank you.