'Hi, my names Shaun Marsh I was born on 17/12/1989, there was no implications when I was born. So at first everything seemed alright. After seven months my mother noticed that I was extremely floppy and took me to see doctors. I began seeing consultants from a year old they concluded I have some kind of muscle disorder but which one they didn’t know.

I had to wear hills in my shoes to support my ankles and then I had to wear callipers which supported my ankles and stop just under my knee.

I attended a mainstream school and was looked after by a lady, whose job was to make sure I was alright in the lessons and also when I was in the playground, which was a place in my childhood which I wasn’t in a lot because of health and safety risks of being knocked over.

Nearing the end of my primary school life my parents noticed that my back was curving, this continued for a few years.

The second year into secondary school I had to have my spine corrected due to the severity of the curve. I had the operation done at the age of 13 when really the consultants wanted to do it at the age of 15/16 but this couldn’t happen. My time in hospital showed that overnight my breathing was not what it should be so I was told I would need a ventilator overnight, which most probably would be for the rest of my life. When I had my back done I had a muscle biopsy, the first one in 13 years of living which did cause some annoyance as my parents asked for me to have one at an earlier age, but this didn’t happen as the consultant at the time didn’t agree.

A few months at home after my operation I had a phone call to tell me that I have Myotubular Myopathy, when I was told I felt relieved that finally I know what I have. I healed well after my operation, and all the consultants were extremely impressed with how much my back had improved, and I am very thankful for what they did.

At the end of my secondary school I decided that I didn’t want to wear my callipers any more, and found that over time my walk strength has greatly improved.

Four years on I'm about to attend a year at Plymouth Uni, doing a media production and animation course, I exercise 6 times a week, and I have noticed an increase in my strength, nothing that the consultants or doctors would say is great change, but I can feel and tell that I have gotten stronger.

I enjoy my life and try most things even if I find them hard at first, I like sports, but can only play ones that don’t involve running around, as I can't run. I would say I live a very normal life considering my disability, I go out a lot with friends clubbing cinema. My hobbies are making short films, practising with nunchakus, some sports.'