The Boy Whose Skin Fell Off

[Damini]

I looked, but couldn't see another thread on this (I've been at my parents and not been able to keep up with the forums for the past week). Did anyone watch this programme when it was on? I cried from the opening minute until the final credits, but it still managed to make me laugh and be amazed at the same time. What a top little guy.

Link here for people who missed it and have no idea what I'm talking about: http://www.channel4.com/health/microsites/B/boy_whose_skin_fell_off/

One of the most impressive tv shows I've seen in a long time.

 

[Lazarus]

is this why we have an "Entertainment" forum

 

[Damini]

I didn't think it would go in the film and DVD section. Suppose it could have gone in the main bit, but I tend to view that as a bit of a wasteland that bridges the music, film and books section, and not as a section in it's own right. Maybe we can just tag "And tv too!" on the end of a subforum, and then I won't get disoriontated.

 

[Lazarus]

was only pulling your leg Dam

you know im a nice guy

 

[leggy]

The scary thing is, I have a very mild form of this. You actually wouldn't be able to tell by looking at me as my skin is pretty good. I had to give up playing rugby though because of it.

I can't help but feel fortunate I am when I see programs based on EB. I actually didn't watch it anyway as I knew I'd end up a greeting wuss.

 

[Damini]

It's a shame you missed it. It wasn't easy to watch, but this guy had the most amazing sense of humour and outlook on life. He made Nell McAndrew cry after telling her his life story, and she gave him a hug, and when she wandered off he chuckled "I could see right down her top when she did that". It wasn't one of those "pity me" bleak programmes, it was just honest, and frank, and really well done.

 

[Jupitus]

I missed it and regret it now, having heard lots of people raving about it. It's very humbling indeed to see someone with such a positive outlook on things despite dire circumstances or conditions, and I think most people could learn a thing or two from it.

 

[Cyfr]

im sad that i missed it, would have liked to see it as everyone has been talking about it. Really nice to see that a guy has lived his life to the full even with such an illness

 

[mank!]

I saw about twenty minutes of it and found it pretty moving. Despite it all he obviously had a fairly positive outlook on life which is quite incredible. He also had a wicked sense of humour, as proved by the usage of his sob story on Miss McAndrew

 

[Wazzerphuk]

It's a shame you missed it. It wasn't easy to watch, but this guy had the most amazing sense of humour and outlook on life. He made Nell McAndrew cry after telling her his life story, and she gave him a hug, and when she wandered off he chuckled "I could see right down her top when she did that". It wasn't one of those "pity me" bleak programmes, it was just honest, and frank, and really well done.

I'm glad about this: the 3 minutes I saw it on for were horrible. His mother was doing something with bandages on the bed, and he was dribbling everywhere, constantly moaning and whining in pain and to stop in a horrible strained voice. Gave me the impression of a very nasty programme, with sickly coating of "look at how fortunate we all are" thrown in for good measure. It's not, so me happy.

edit: I'm doing well these days, I didn't even make a joke about dandruff.

 

[Damini]

It was broken up with really harsh scenes, such as the one you saw, but they really needed to be there. He was such a good humoured bloke that I think without those scenes you'd not realise just how much he was having to endure, and how bad the condition actually is.

The most poignant thing for me was when he struggled all the way to Downing street to meet Cherie Blair, and both he and his parents knew the trip would probably finish him off, but he said he had to go anyway because he needs to raise money to help other people in the future born with the condition. Poor little sod was morphined up to the eyeballs, and there's a picture of him with Cherie, her grin stretched across her face, and then you see him on the train home, and the interviewer is just trying to get him to cling on long enough to get home to his mum before he dies.

I think that show probably has raised more money than meeting the Chesire Cat Woman ever would anyway.

 

[Bullitt]

I managed to watch this and it's one of the most uplifting and at the same time depressing programmes i've ever seen. You can't help but feel the upmost respect and amazement at this guys character. 36 years of (what appeared to be) the most excruciating pain and to still have such a positive outlook as he does. Makes your own worries/problems dissolve into insignificant toss.

 

[Wij]

I managed to watch this and it's one of the most uplifting and at the same time depressing programmes i've ever seen. You can't help but feel the upmost respect and amazement at this guys character. 36 years of (what appeared to be) the most excruciating pain and to still have such a positive outlook as he does. Makes your own worries/problems dissolve into insignificant toss.

Pity I missed it. I know some people who could do to put their problems into perspective tbh

 

[k9awya]

never saw it, but i saw a 2 page feature on it in the mirror last week, i was just like

eeeeeeeeeeeeeeeeeeeeeeeek!

 

[Pippa666]

I watched it, made excellent viewing...was very very sad though Did make my eyes water when it was the funeral.

 

[Afx]

I missed the beginning unfortunately but im really glad i managed to catch the rest, It really was one of the most moving programs ive seen in a long time.
Just amazing how he managed to keep his sense of humour and positive outlook despite the terrible pain he was in.

It was really upsetting at times but just goes to show that those of us who are healthy should really appreciate what we have. Shame such a great bloke had to suffer as much as he did

 

[SilverHood]

My Cousin Aaron had this condition in its very worst form - doctors said he wasn't likely to live for more than a year or two, yet he managed to hold on for 16 years. He also had the best sense of humor, and would often have the entire family in gales of laughter, which is quite amazing since his skin blistered at the slighest touch (children sufferering EB are called "Butterfly Children" for this reaon).

It really is one of the worst conditions anyone can suffer from, and I wouldn't wish it on anyone.

 

[Bullitt]

That was their charity event, releasing butterflies in Hyde Park. Wondered what all that was about.

 

[Frizz]

I have a friend who has a kind of weak skin disorder, but nowhere near in the same league as the guy in the program (Gets savage blisters from doing sports, and cuts easily from knocks). I take the piss out of him, but reading about this changes my perspective on it. I particularly admire this mans courage, and i like his views on death. It's a completely different outlook i'd never thought of. And I greatly respect that. I'll have to catch a repeat of the program, because it sounds pretty good.

 

[Tom]

I didn't see the program, but I did catch a rather excellent on-the-road documentary about Status Quo. Very revealing. And mulleted fans everywhere!

 

[Ezteq]

when people have it good they always look for something to worry about (i have been told i do this and im sure its a common traite) when people have it bad (like this fella, he had it about as bad as it can get) they have such a huge thing to worry about that the only thing they can focus on is the good, how to help others in this situation, cheering other people up so you can share laughter instead of watching them suffer. Its one thing about humanity that i greatly admire (in some people anyway) is optomism i love that saying its something like if your in the gutter you can look up to the stars or something like that by oscar wilde i think, and for that little fella to keep his humour and be so damn brave i think it restores my faith in humanity that there are people like that on the same planet as me.

 

[Jupitus]

I didn't see the program, but I did catch a rather excellent on-the-road documentary about Status Quo. Very revealing. And mulleted fans everywhere!

Shallow post #1... wonder how many more we'll get in an otherwise thought-provoking and generally generous thread...

 

[Tom]

Sorry, but circus freak shows don't really appeal to me, and thats the only reason that program got made.

 

[Bullitt]

I beg to differ, in no way was it a 'circus freak show' and the fact that you didn't even watch the program gives you little credibility in claiming it as such. If you had watched it you would have realised that this guy was trying to publicise EB as much as he could so that others don't have to suffer like he did.

 

[Tom]

This program would not have got initial funding had it been anything other than a rather gruesome disease. Thats the way it works I'm afraid.

 

[Bullitt]

As much as that may be the case it was Jonny Kennedy (the guy with EB) that invited them to make a documentary of his life story and his death iirc. Rather than the channel company seeking out some unfortunate soul to cash TV ratings from.

It was a heart moving and uplifting programme that offers a perspective on life that seems to be a rarity. To taint it as being purely entertainment and a ratings booster is rather sad and focuses away from the remarkable story. I suggest you get hold of a copy or watch a repeat if its on, albeit if you deem it a 'show'.

 

[Damini]

Freak shows are ten a dozen and they fill an otherwise vacant scheduling slot, there's no denying that, but honestly Tom, it was this guys personality and grit that made this show what it was, and kept people watching the whole way through. If you didn't see it, you really shouldn't dismiss it as a freak show, because it never lingered on the physical, other than to contextualise the pain that Johnny was in. Whilst it would have been easy just to show the hardship of it all physically the show really focused on the person, the huge personality, who was far more important than the broken skin.

 

[SilverHood]

This program would not have got initial funding had it been anything other than a rather gruesome disease. Thats the way it works I'm afraid.

If it raises awareness of EB, then what's the problem?

20 years ago, people were accuses of mistreating their children who were suffering from EB - most people don't have a clue what it is - if you see someone with blisters on the skin everyone day, you might wrongly assume that someone's been beating them up, especially in mild cases, since it's not hugely obvious that it's a disease.

There's no cure, and maybe with more people becoming aware of it, progress can be made.

 

[ManDevil]

Next week - 'wij - The boy whose cock fell off'

 

[Tom]

Freak shows are ten a dozen and they fill an otherwise vacant scheduling slot, there's no denying that, but honestly Tom, it was this guys personality and grit that made this show what it was, and kept people watching the whole way through. If you didn't see it, you really shouldn't dismiss it as a freak show, because it never lingered on the physical, other than to contextualise the pain that Johnny was in. Whilst it would have been easy just to show the hardship of it all physically the show really focused on the person, the huge personality, who was far more important than the broken skin.

Fair enough, I didn't see it. I trust what you say, but bear in mind there is always a financial angle to any programming you see on network television stations.

I'm just a cynical bastard when it comes to documentaries that focus on people's pain and anguish. You'd all be amazed to know how much of what you see on tv is scripted or rehearsed. It really is incredible. Not that I want that to take anything away from this guy's life experience, I'm sure he was very frank and honest.