Hello, my name is Shaun Marsh and I was born on 17 December 1989. At birth there were no implications, so at first everything seemed to be fine. After seven months my mother noticed that I was extremely floppy and so she took me to see the doctor. I began seeing consultants from a year old – they concluded that I have some kind of muscle disorder but which one, they didn’t know.
When I was a toddler, I had to wear hills in my shoes to support my ankles. From the age of four I was wearing leg splints (callipers). I attended a mainstream school and had a general assistant who took care of me in lessons, and made sure I was ok. She would keep an eye on me in the playground, I was lucky enough to have an area where me and my friends played, this made sure I didn’t get knocked over by anyone who didn’t know me. I didn’t go in the playground much as a child due to the health and safety risks of me falling over.
Nearing the end of my primary school life my parents noticed that my back was curving, this continued for a few years. I had a body cast made when I was nine; I had to wear this as close to 24 hours as possible. I hated wearing it with a passion; it was the most uncomfortable thing to have on at night.
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, to allow my body to go through my growth spurts. After the operation I didn’t have to wear the body cast anymore, to me this was the best thing I was ever told.
My time in hospital showed that overnight my breathing was not what it should be, so I was told I needed a ventilator overnight, which would be for the rest of my life. So I got rid of one thing the body cast and instead had to now use a ventilator over night. In the nine hour operation the consultant had done a muscle biopsy, to determine my condition.
ShaunA 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 the name of my condition. 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. When I finished at secondary school, I decided that I didn’t want to wear my leg splints (callipers) any more. I found that over time my walking strength, balance and mobility had improved.
In 2010-2011 I attended Plymouth University, doing a media production and animation course. Going there really built up my confidence and gave me the opportunity to live away from home and enjoy the social side of university, which is amazing, anyone thinking of going to University I would say go do it. The universities offer a lot of help and support.
In the last five years I have attended a gym on a regular basis in my hometown of Bristol. I go five times a week, exercising different muscle groups on different days. I have noticed an increase in my strength, nothing that the consultants or doctors would say is a great change, but I can feel and tell that I have gotten stronger. My balance and stability has improved and I find I don’t fall over as much as I used too.
I live my life to the full. I have a really good social life and have regular weekends away with friends. I would say my condition has made me a strong willed person, no one stops me doing something, if I want to do something I will, no matter what other peoples opinions are on the topic. My hobbies are making short films, exercising, practising with nunchakus, table tennis, pool, snooker and going to see Bristol Rovers play football.
I enjoy exercising so much that I took a fitness course and am now a fully qualified personal trainer. I am also open to give advice to anyone on exercising, or general life experiences I have had growing up with the condition. So anyone who is reading this feel free to contact me by email at firstname.lastname@example.org or Skype at shaun.marsh6.
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