Jonny Kennedy

I remember the programme being broadcast and me thinking I wouldn't watch it because very naughtily I often shy away from work-related-medical things on TV in the evenings. In the end it won thirteen awards including an Emmy and some BAFTA's.
The Boy Whose Skin Fell Off was about a young man called Jonny Kennedy with a skin condition called Dystrophic Epidermolysis Bullosa. Probably something not many people have heard of but of course something any GOS nurse from the 1970's would be very well-acquainted with.It's a genetic condition where the skin lacks the "glue" that holds the layers together, the slightest knock or minor abrasion will cause a major injury and blistering which can take months to heal.Sufferers spend their lives in agony and swathed in bandages.
As we moved around our twelve week ward placements there were some very exciting stints and some that we  used to dread.
Plastic surgery was a plum draw and very high tech for then because the first Tessier facial reconstruction operations were being performed, plus the ward sister was lovely.
Likewise cardiac surgery always a bit dramatic and involving.
Neurosurgery also legendary for some high speed action.
Private patients always worth it for the standard of food in the fridge.
Then there was dermatology.
Cohen Ward, and I can tell you that I was assigned to Cohen for a hundred years but actually only from March 10th to May 19th 1974.There I passed my Aseptic Technique assessment under the very watchful eye of Sister McQueen who continues to maintain the highest standards of infection control at Great Ormond Street to this day.
Cot after cot of itchy, scratchy, irritable children and many in isolation cubicles, so slightly muted soundwise but still very itchy, scratchy, irritable children.This was the only ward in the hospital where you could expect to end your twelve weeks with the softest hands you would ever have in your life because many hours were spent immersing children in warm emulsifying baths.For those who may not know, this was a mixture of a very gloopy substance (still prescribed) which you dissolved in the bath and which leaves a very soothing moisturised layer on the skin.
The children with Epidermolysis were particularly difficult and I'm not sure that as young student nurses we fully understood just how challenging life was for them.They were children who may have spent months and months in hospital and not surprisingly they hated every minute, not least the excruciating pain of the daily baths.Behaviourally they were a nightmare, entirely understandable it has to be said, and there we were barely out of our teens ourselves and trying to deal with it all.
So I was very grateful to Tonto Press for a copy of Jonny Kennedy, The Story of the Boy Whose Skin Fell Off.
If I was only going to gain a real insight into just how difficult life must have been for these children it would be worth reading, but I've also read about a remarkable life lived under constraints it is almost beyond normal thinking to comprehend. Events most of us take for granted in daily life were a major achievement for Jonny and his struggles are all carefully chronicled here.
Roger Stutter initially wrote the book with Jonny, and has completed it since Jonny's death at the age of 36 in 2003 and now published.
It does make for challenging reading because Jonny is nothing if not honest about the horrors of his daily life, and by his own admission he could be very difficult to live with, all of which seems like his prerogative given his situation. But shining through it all is a matchless and life-warming spirit that touched everyone who knew him and after the TV programme was broadcast resulted in over half a million pounds being donated to Jonny's memorial fund.
It puts any amount of your own woes into a very neat perspective and is a very fitting memorial to a very brave young man.