Originally Posted by Patricia (Paul's mum)
In case you're interested – brief summary of Paul.
Duchenne Muscular Dystrophy is a progressive muscle wasting disease. It is genetic and affects every muscle in the body. Paul was diagnosed at 4 years old, had to endure daily physiotherapy, wear night splints to stop his ankles contracting, progressed to callipers, went off his feet at about 8 years old and was confined to a wheelchair from then onwards. At 26, he could only use a computer if you put his hand on the mouse – then he was brilliant! He couldn't do anything personal for himself, was on a liquid diet and used a ventilator at night and a few times during the day. (Respiratory muscles now affected). He was always happy and never complained. These boys only usually live to late teens, early twenties.(In fact someone we knew passed away a few weeks before Paul at 15). Paul went to a normal main stream school. He passed 8 GCSE's then went on to pass GNVQ ICT Foundation with distinction and was presented with a City & Guilds Bronze medal, for which we had to go up to London for, by train. (That's another story, very trying experience). (They didn't know he was disabled or, as we like to say, differently abled!) (He wasn't interested in normal GCSE work, but excelled in GNVQ as it was all computers!) He then went on to pass GNVQ ICT Advanced with distinction. He was unable to work, so did lots of voluntary work such as creating web sites, teaching people how to use computers, publicity etc. (Funny how he had lots of patience teaching other people, but was forever telling me how stupid I was for pressing wrong keys etc. (He was only joking!) All in all. Paul was a very courageous person with a lovely personality, although he would tell you what he thought, he was not one to sit back, by no means shy!He inspired many people and was very much respected and we are/were very proud of him. He never let his condition get the better of him. You would be surprised at some of the things we achieved which others thought were not possible e.g. Playing Pharaoh in Joseph musical at school (made wheelchair into a throne), carrying wheelchair (with Paul in it) up flights of stairs or steep hillsides, so he could get to the places abled bodied people could, seaside holidays, went to youth clubs, cubs and scouts camp, boats on the river you name it we've done it or at least tried it!
If anyone is interested then please feel free to post this on EAB, but, please be careful! Paul knew he was getting weaker, but we never discussed his life span, there may be others who would read this and also not be aware of the life span factor. No point in upsetting people!