If anyone has not seen this documentary on CH4 over the past couple of years- please could I turn you attention to CH4 at midnight tonight.

If you want to see someone who is entertaining all the way through his illness to his eventual death at the end of the documentary then please tune in and see just how brave Jonny Kennedy really was.

The guy suffered from a condition called Dystrophic Epidermolysis Bullosa (EB) which means that is skin literally falls of even through the slightest touch.

I saw this program the first time it aired, and I wept a hell of a lot- because of the guys genuine comedy and also the way he lived his life.

If you can tune in, I urge you to do so- it will shock you what you see, but please acknowledge if you can, the life of one of the most bravest people I have never met.

RIP Jonny Kennedy!
Peace Love Always

Yeah, it was brilliant. No-one should ever have to suffer the way he did. His humility, humour, kindness, courage and determination were an inspiration. Really beautiful stuff.

I meant to watch this but ended up missing it - again!

Did anyone video tape it?

I miss it last time it was on.And normaly nothing easy in life let alone on tv make me want to cry.But this did make me shead a tear.I never hear of EB before and i hate to see anyone suffer with it what i seen tonight it really did move me.The program was nicely put too about jonny and i think he be proud of the way it was aired.He was one brave man that lived life to the max and nothing stoped him doing anything till the very end and also helping people on the way too with EB,I think his funeral was tops it just showed what a loveing funny person he was with the coffin and the songs.And when he gave his mother the tiger after his death was very heart sinking too.

Wow! i watched this last night also, man it was gripping.. And man it really touched a nerve!

Just think, 36 years of pain, and still managed to have a great sense of humour!

but if you get the to see it, then do so! it should be on that new more4 channel soon.. !?

Originally posted by Hels
I meant to watch this but ended up missing it - again!

Did anyone video tape it?

I recorded it onto DVD if anyone wants to watch it again- give us a shout please.

I watched this last night and was amazed at how after the years of suffering, he could still have a sense of humour. How cruel a blow to suffer so long from such a painful illness to then be diagnosed with cancer. I cried and I laughed. People say they can't watch things like this, but he wanted to make this documentary to raise awareness of a relatively unknown condition. He made his own words up to 'what a friend we have in Jesus' in church - singing things like 'always was a rubbish singer' and 'never enjoyed the harvest festivals' which I though hilarious.
I know his family would never wish him back to suffer what he did, but they will miss his presence and his wicked sense of humour.

There is a little girl in Sheffield with EB. Her name is Leanne, and she goes through the same suffering that John did every day. I think she's about 11-years-old now.

Cried my eyes out when I saw this on Sunday night.

He was such a brave man and had such a wicked sense of humour... when he had just hugged Nell McAndrew and then turned to the camera and said "I could see right down her top then" I couldn't stop giggling.

I cannot imagine being in the kind of pain he suffered for his whole life. I think the documentary has served its purpose of raising awareness of DEBRA (http://www.debra.org.uk/) , the charity that raises money for EB research, in an excellent way, whilst being truly touching without being contrived or manipulative.

Hi again.

I recorded this onto DVD if anyone wants a copy if they missed it or forgot to tape it.

Send me a PM or let me know on here if anyone is interested please.

Also if anyone would like to make a donation to the charity- the linky is here http://www.debra.org.uk/

Cheerz