I was diagnosed at the age of 5 and a half in Melbourne.  After falling while playing chasy at school, I hit the back of my head on a pole where 2 lumps formed at the base of my neck. Nearly every department in the Melbourne Hospital didn’t know what I had, to the point they were making up names to give the disease. Until someone tried the Genetics Department where Dr. Rogers diagnosed me with Fibrodysplasia Ossificans Progressiva (FOP). My name is Derek, friends call me Dez and here are some parts and moments of my life.

This disease certainly is not an easy thing to cope with when you’re a young child without the knowledge of the fear of what will happen when you try things or fail. I still consider myself lucky compared to most others.  I competed in Little Athletics as a child and did things I shouldn’t have, mostly without consequences brought on by FOP.

Until puberty came around most people thought I was faking a disease to get attention at school because it wasn’t really apparent that I was any different than anybody else. Then out of nowhere things changed so rapidly that it shocked my entire school, I had a growth spurt and I am approx 6 foot 3 inches tall. The Doctors recommended I use a kneeling seat rather than a conventional chair, what they didn’t expect was this was to cause my spine to keep leaning forward more and more as I grew older.

I was given a king single waterbed to sleep on to help with comfort since I was twelve. Any other bed since, has been too uncomfortable. After too many falls a mobility scooter was the only option at fifteen years of age.  I wasn’t happy about it but understood none the less and my resilient nature got on with life and adapted as it always does.

At 19 I started a computer business which I ran for 3 years mainly to gain some experience. Due to requiring constant transport it was no longer viable for me to continue, so I closed the business down.

I taught myself scripting and began making websites and graphics in Photoshop to keep myself busy.

I have always refused to let FOP stop me from doing most things that I enjoy, even fishing. I went deep sea fishing and reeled in an 85lb black marlin, I also took family and friends out for another fishing trip and caught my first blue fin tuna. I took the 3 wheeled scooter onto the boat and it was quite a challenge to balance and fish at the same time.

Photography is another passion of mine that grew the moment I borrowed my sisters cheap little film camera, little did I know that later in life I would buy a camera and be good at capturing moments that caught my eye or my heart. My partner had a love for horses and I wanted to help support that. We bought our first camera and started going to horse shows and events to take photos for an online horse magazine. I’ve always had a love for animals big or small and taking photographs of them was another way to share that love.

We spent three years taking show jumping, cross country and dressage photos before taking the leap and buying our own horse for my partner to ride.  Not just any horse, the one we chose was a horse that nobody really wanted.  A horse that was saved from a slaughterhouse and later bought from a Horse Sanctuary, every owner just used her as a confidence horse before selling her on. So to me this horse never really had a home, until now.  Without realising it I began to mentor my partner with her riding and boosting her confidence, along with that formed a very special bond with a very special horse called Millie.

Documenting my partner and Millie’s riding progress with photos and write-ups on a local horse forum we got to share our journey with a large portion of the horse world and give others confidence along the way to continue riding. I was able to teach Millie, give her confidence to try, and show her the love and respect she well deserved. I was told by a few professional riders that the close bond and trust we shared was something many riders strive for, considering I never rode her that it was quite unique.

We also started a local beginner’s horse riding club together, I took on the jobs of organising riders, the bbq for lunches and photographing riders during their lessons.

Millie was not a young horse when we bought her, unfortunately she died after 5 years from a suspected heart attack while running through the paddock. Her memory lives on in photos of some of the moments we spent together.

Her passing put an end to my photography of horses for over the next 5 years or more. My partner and I also parted ways. I was later to land myself a job in technical administrator role through one of the members of our riding club who suggest I apply for the position at the company she worked for

I began working for a Communications company and handling wireless internet customers, technical support, monitoring the company’s wireless towers and working with a great team of guys. FOP was determined to stop me from working, I fell in the shower fracturing my pubic bone and was involved in a bus accident coming home from work which both affected me but I refused to let that get in the way of a job I needed to do. I had a very busy job helping two companies with all things to do with wireless internet. Unfortunately the entire company was made redundant due to a buy out and we were all no longer needed after 4 years and a lot of hard work.

Currently I’m 44 and although quite restricted now and I no longer work, I still continue with photography when I get the chance.  I did some charity working offering local families photo sessions in the park for a small donation to help raise money for a 3 year old boy with a brain tumour.

I still live independently with support workers coming and going to do the things I cannot. Mostly these days I am a keen PC gamer who takes life slow but I have learned to take each day as it comes, deal with things when they happen and not to stress too much about the “what ifs”.

Thank you for reading my story.