The Man Whose Skin Fell Off (BAFTA-AWARD-WINNING DOCUMENTARY) - Real Stories |

[Music] and I thought all this waistcoat you know which was the money obviously had on yesterday Oh goddesses to your services you could sell that on ething he says just probably says the color the red color one I've cried put he's had enough I saw one Monday seen him a that was it's sad seeing somebody so far you know it's hard to say but I'm pleased he's gone I am pleased he's gone welcome everybody my name's Johnny Kennedy I'm 36 she wants everybody sitting in the crematorium going what's the significance is it baby there's my mother and next towards my brother and that's me in the box I have come back in spirit I'll tell you the story of my life and my death Johnny Kennedy is one of the most extraordinary people in Britain for 36 years he survived his very rare and painful genetic skin condition with time running out he wandered his last four months to be as extraordinary and uplifting as his strange life and asked us along for the ride it's going to be a busy summer Johnny's determined to learn to fly pay a call on number 10 and have a huge housewarming party in his new Dream Home but first there's the funeral to sort out oh hello there okay um Johnny Kennedy uninterested in that purchase right well I can take you through all the different choices and what's available Johnny's chosen to pinecoffin plain sides plane lids like what's on display now his measurements five foot three you have to give a little bit of performance I know it's about 16 18 inches wide 16 so is that my two insides great boys got to do now is cut it alone see that's the instincts and that's the ticket easy i is it gonna be painful how long will it last am i gonna drag along and be a dribbling old fault being in bed and I kind of do now hmm all these sort of things I really just go to bed go to sleep pop the clothes very nice have you thought about what you'd want on the side well I would like a tiger and the far end the Heinz beans same you know right what's you on there just a tin a label of a big thing on the report Heinz means 57 varieties all the wrestling in the same shape and everybody but you don't want ants on that's not what mom Sunday so where would you recommend a short key pitch I mean and I'm not using it like strew the weed a lot of people if you've got no time so guys I'm not a nut juice I've got different ideas to different people and I can't say that I've had many fears in life cancer doesn't worry me it's just another bloody nuisance Johnny's rare genetic skin condition evey means his skin is constantly coming off and trying to regrow and eventually it develops terminal cancer people even in this day and age uh still frightened about death they won't talk about it and it's such a shame because it's part of life so why not organize it like you would organize an anniversary or a birthday let's get it right degrees Celsius that is 73 degrees Fahrenheit as your weather forecast Johnnie's become a local celebrity in Northumberland its back to the music of your life your station 107.5 radio and a very good minds you joined this morning by Johnny Kennedy I'm fine sir how are you doing there thoroughly enjoying this mentioned earlier on is been afflicted since birth with the horrific genetic condition dystrophic epidermolysis bullosa but despite that Johnny has is very intelligent Johnny can we just briefly talk about your the condition that you can tell us more about it yeah I mean if people have seen me out in the boat I look a little bit different from the norm a little bit different basically what it is there's nothing there to hold or buying the skin so any knocks or bumps or friction and the skin blisters and comes away I like to say it as the skin is like velcro so the hooks are missing so any knocks or severe friction such as constant wanking just doesn't go well with the condition because it pulls the skin off and then you're not yeah you've had this condition since birth both parents have got to have the faulty gene and if they pass that down you end up with your long with my condition the chances of being born with EB are 1 in 300,000 both parents must carry the defective gene when Joni was born I didn't see him for two days basically because I think they thought he would die because I didn't know such a terrible lot about the condition Johnny was brought up in Whitley Bay on the northeast coast the birth II had no skin on his right leg from the knee down but from the start he was a fighter I spent a long time just sitting on the step in the garage watching me brother play and the front drive because every time I seem to play on that myself being at that age where you're a toddler you're are seems to spend more time on the ground when Johnny was 13 his father Frank moved the family to Rochester in Northumberland a remote village near the Scottish border you don't go into the pub at lamington unless you want to hear more about sheep and how they've been sticking their hands up sheeps backsides the turn lambs around and pull the legs out in their head so you just don't want as a teenager stuck in Rochester Johnny always hungered after the bright lights of hammock a nearby market town sunny Saturday morning from the heart of Alec this is Lion Heart Radio I've been told that you'll love this place is this true in the world and you just feel right and I Nick is just one of them to me I've been coming back and forward here and it's just always felt my home I've got a question in here it's from D'Arnot nanoq yeah and he says tell me more about your charity right okay um it's called Deborah which when I'm trying to raise money people say who she but obviously stands for the name of the condition with a research association on the end would you like to introduce the next song because on well it tells me that you're a queen fun as well oh you're the discharge go for okay here we are in this beautiful summer day at Radio Lion Heart with Queens don't stop me now [Music] Johnny's thrown caution to the winds in his efforts to publicize EB parachuting from planes winning awards and becoming a driving force behind Debra the charity devoted to finding a cure for ep [Music] [Applause] four years ago with the help of Deborah's money there was a breakthrough EB skin was treated and made healthy in the lab this potential cure comes too late for Johnny but he's tireless in his efforts now McAndrew the forces favorite pinup supports the charity together they're releasing butterflies to symbolize the condition you y'all get a celebrity guests would be perfect for Johnny's housewarming Phoebe has wrecked Johnny's body he has a high voice due to scarring on the vocal cords and hasn't been through puberty he's a 36 year old in a child's body I haven't had relationships cuz I don't think enough of myself to get involved so I've always just want of a better word just flirted just nice the belt but once things get too heavy in there just backed off and let other people move in and get on I don't think it's fair on the other person to have to cope with all that I have to cope with it which is what they would do I could see right down lash t-shirt aren't you then come on I for one you know like a lot people who don't realize your own strength that's you don't think you don't know how much pressure you output yeah I mean my mother or not and as she likes to give someone other than she knows she comes you know it's just a case of putting an arm around you and being there and that sort of thing but so I miss out on a lot you know but it's just life it's just life it's alright alright I'm you Stuart just take it today as it comes I mean 36 years and you just living with dressings and soles I know one day with the help that you've given and others that this will be history this will be something that's in the archives and people won't have to suffer like this so as I say you're part of history you're making a big difference look after yourself and thank you for the deep Cheers bye take care I'll wait here I'll be here yeah cuz yeah the guy's a pearl I was telling her about the condition and my life and the struggles jubilant is the story so yeah she's got a phone number no but she's got write a novel Johnny's best childhood friend his Lord Rupert reads tale he's a working peer for the Liberal Democrats and should be a perfect speaker at the DIY funeral it's gonna be by different funeral and I would find it an honor if you would say a few words as a friend to my feel if you find like you could cope with her I think okay but could you cope with the fact that don't get the last word you're wrecking your life you know Eamon risperidone associate Johnny with the condition you know it's like yeah it's something that afflicts Johnny but it's not what it he is no it's eight you're a law judge that's your reflection yeah yeah but made you the way you are now it doesn't you know it's not what actually defines what Johnny is you know in one the times that I found it hardest when I went up to busy unit and Johnny was in tears you know he just said I can't take the pain anymore I want to die and and I'm in the mazing thing about you is you've Nick you know you've always had this sort of way of not saying that I suppose at times I've been hard on people like yourself because you don't know who else to turn to you know when you're suffering in your hurt and that's sort of thing you don't know you're just looking for anything and and now you know you just wanted to get away from it so yes I turned to anybody and say I've had enough what do I do it was a bit of a shock when he first came up and said you know this I'm not going to survive this one he says I'm doing this film and he says but I'm a bit worried about the schedule I know I said the real I says now what if doing all the mean fill them and I hope and I want me just to grew the bed and lie and die and sort of the cameraman and Selma's going how are you feeling it's it dead yes do we'll give him any more water are you feeling sleepy soon [Music] ten months ago just across the river it's in Thomas's Hospital Johnny was told he had a year to live his battered skin had finally given way to cancer because of this he was determined to leave home and set up on his own whatever happened for however long it near thee I wanted to spend time where I always wanted to be which was over a Nanak johnny has a team of round-the-clock carers whilst his mum is a regular visitor oh that's your chest it was September the 11th last year when he was diagnosed with the tumor and that was it he was off I remember would left the hospital and I'm Westminster Bridge and he said where do you want to go yes and I mean I've been given the most - whoever you are the most devastating your news and I just shut my eyes and I could feel the breeze from the river and the Sun on my face another all right that's why I would probably see where do you want to do because I was lost yes well totally look busy I can't believe it really although you know it's true and trouble is nobody sort of can tell you anything you see apart from the wanted to remove it but Johnny maybe in his wisdom I don't know decided that was no he wasn't going to have any any surgery everything was happening new house getting me independence back all of its coming around and then you get kicked in the bollocks when it comes to somebody soon right Kennedy you've got cancer stick that in your pipe and smoke it I believe that will all come down to earth to learn lessons and that's earth is a classroom I feel I came down to understand what it is like to be in discomfort all your life to learn about frustration and possibly overcome that I know in my heart what I believe of beings different religions a bit like a pick-and-mix I know what I'm comfortable with I believe in a god spiritualist believe that there's life after death and I have the open circles where the bring auntie Doris down or bill and they give a lot of comfort to a lot of people it's this belief in the afterlife that is comforted Johnny as it gives purpose to his often unbearably painful life Johnny's mom and dad brought him to the spiritualist healing circles at the age of four he's known one of the ministers Benny green shields ever since she's first choice to host the funeral and I just said to you I've been aware of the gentleman nearly all week for some reason and as a gentleman I feel he will walked on the hills no it's not your fault no no all right just before I leave you can I give you a an Alsatian dog no no no then I'm not with you Johnny so can I just say thank you because thank you thank you well you know I've asked you and George to sort of conduct the service I do so I've been having a bit thought as to how I want it put together I mean everything that I'm doing with the coffin and that sort of thing I'm hopeful she'd bring a smile so it should well I suppose it's closer to home now it is and all you want to do is to have somebody somebody with you to take the hand and see and reassure you that this is going to be alright sometimes I think it's a matter of someone saying to you now's the time giving you the permission really yeah if people would look beyond what the see and look into you and see the spiritual side and the the person you are rather than what this person on the outer shell part you'll see a lovely soul right lovely spirit [Music] you say do you know if you've learned your lesson or do you go to your maker when he goes yeah Boop you didn't learn that but you'll have to cool down again and do it all again I feel I have learned my lessons I feel I have come to terms with it and come to terms with people around me like my father people when I'm out in the street but don't get frustrated when to see what's wrong with you can I hold the door for you don't say all off I'll manage me soon [Music] Johnny's only had one day in his life without bandages 75% of his body is covered in sores and what's the cycle of the bandage changes once a week you mean on the back the other ones just as really needed do something please George's even after 36 years you need to get your head round the severe discomfort and pain something stuck down here due to the constant scarring the skin is closed up over Johnny's hands and feet making them useless chips getting shy I didn't what are you doing oh yeah hold on that one's back sorry so I just thought sometimes look back and wonder how how how I've managed to be quite honest but you do if you work day by day it's a job you get on and you just get it get it done if you can imagine picking up a newborn baby to be fed to be changed and every time you pick that baby up ya blistering it I was asked one time if I would carry on with a bird knowing that an EB child would be born and I said no I would terminate it's not just a disabled child that's being born its disabling a whole family there's now an inter uterine prenatal test for EB so abortion is an option it wasn't available when Johnny was born yes had I had I been in a more modern situation and found myself pregnant I would have aborted the baby and and and not felt guilty about it as some people do having seen what what these children have to go through I'd rather Johnny had been born or physically or write healthy but no I don't I'm not sorry he's Bill is born is it the person that feels more sorry for was Simon because Simon missed out on a lot he had a sibling but he wasn't able to roll around with him and fight with him and play with him in the way to normal healthy boys would be able to sorry we're not in the right place Johnny had to be looked after he had to be cared for us which I've done as best I could whether it was right or wrong I don't know but I've done what I felt was my best and I couldn't do any more Johnny's father never came to terms with it I think maybe we felt it was sort of a slight on his manhood I don't know well I mean we're each carrying the gene so we were each is responsible as the other Johnny off the fields you missed out on a lot actually some nights are better than others I came to catnap more than anything you know you came to sleep for a bit and then I mean most people don't think of when the turnover it's an automatic reaction where when I turn over to need your exercise so you wake up in you turn or ah it's just you stick if a bandage comes off or something right you can stick to the bed your head sticks to the baby here come on over if I want to get rid of the pain and the discomfort I take myself to imaginary places if you can't get away for at least a few minutes or whatever you couldn't picture this everybody picture this really so here lies why on this mountainside right and it's a nice warm the blue skies as the yard white fluffy clouds passing by but basically it's blue skies slight breeze and yes sort of sitting next to a stream and the water are so clear you can hardly see it but you can hear it rippling by and just let the branches of the trees shut the family and I saw a girl or something like that and it's just peaceful helping yourself [Music] [Music] just sailed for Europe in the juice nah die and become spirit again right and you soul is free I think I did bold if the say that lanes are sitting clouds flipping their little house you know I'll be up there getting them off their clothes doing drops of a thousand feet then pulling oak I think you need to spice things up a bit for me please back on the ground Johnny goes to pay his last respects to his dad Frank Johnny hasn't visited the grave in years this is not gonna be a good day this is not going to be a good he was a very fit man he liked to cycle and rock climbing and he didn't drink you like the occasional pipe or cigar if he could scrounge it off me he just found the whole situation of me just a total embarrassment in those days little was known about EB and Frank tried several home remedies including salt water baths and exposing Johnny's sores to fresh air what's missing about sighs well when I was younger my father stripped me off of all my bandages and stuck me in the garden and I don't think it was a very good memory and ever since then I've never really liked flies if we're sent down to learn lessons I don't think he learned to use which was to care and to help others and I think that's why he died at 62 because he wasn't he just wasn't getting it he wasn't grasping the reason mr. what life was all about but that was a was just manic don't man but it's the same Obi's it was him he knew that that would send me packing so maybe it doesn't want the word and that became a became an ongoing so something great yeah I think you're gonna snuff it every night you can't the village well I should've done it I've got him and if I had anything living on me its Jegs Charlie good if you open your wallet I'll spray the moths I'm not just having in your unit so as I say no I'm organizing the problem we're going to be warned beforehand I loved your point a lot of people know who we might I've got organized so at all just to hopefully fall together and that's what I was gonna ask you Joe I've gotta have some families eat some food weather wish Oh bollocks you missus don't mean since I've got that old files gone you're not reckon I must admit it's another one of those fantastic things you've asked me to do I feel it's important to have some fun you speak for me to say something but I'll have to say nice things my shopping you know I'm not gonna be there but I'll come and haunt you so I'm gonna say nice thing yeah are you worried like it's finding something nice to say as long as he stands there says a few words you can say well he likes I don't mind but just to know that my brother stands in front of everybody and at least starting some moaning it says I was use brother and I'll do it for me I know when the end does come if I'm still here I'll have that many emotions going through me because number one it'll be a relief for Johnny the release but it'll be a relief for me as well so I'm going to feel that then I'm going to feel terribly guilty feeling relieved that he's not there and on top of all that I'm going to miss him desperately that's now it's just a natural picture the colors it's nice like shampoo I've got well they are not well the butterflies on the top no one I heard that was just a headband okay and she's got a Deborah necklace on which is asked to keep it's just a really natural shot I think it's really good lots of color makeup room didn't put in the conservatory did you fancy now in the country yeah she's very nice lady fancy and what's not what's not too fancy I mean yes Johnny isn't finished yet he's still determined to host his housewarming party and visit number 10 success today [Music] I'm David Rees I have to see you ma'am did his proud again didn't let us down not that I ever thought you would you brother did a stunning job with the barbecue well I know I couldn't lift it up without but that's what families are for well it's odd you know cuz everybody's here King well it is a housewarming but in one respect is also everybody's coming to say goodbye to Johnny and because he's got friends from all over is odd feeling because it is quite bizarre you know and everybody's been talking about it but it's got a nice feeling as well about it because of its very relaxed and very friendly round off the day Johnny's VIP guest has turned up topped by ever since and just any you know talking to you really yeah it made everything even mark Lee because she was saying just anything but you know it's a hell yeah and that's what you know that show really makes for different judge so you'll be pleased to know I'm gonna run the marathon for you next year oh yeah I'm sure thank you very sad today I am I'm thinking how on earth I'm gonna get all the way around you know I mean you've done what parachute jump done you Charlie I was me like that I had me gliding doing look the loops don't maybe that's good here yeah babies don't the first ever was a few highlights but obviously now okay if that's what you're getting that makes it more special yeah it really does to get everybody together and see everybody cuz yeah you don't know if it will be for the last time or whatever again it's death and it's part of death leaving people so we all know that my mom knows that my brother knows that okay I am a greeting I'm leaving I'm going to somewhere that they can't join me at this moment in time but for me it's it's a freedom it's an escape so to accept what's to come is to know that you're going to have to say goodbye he's just got no no interest in food at all and watching him eating is hard work he's finding food very hard work so there's nothing much you can do I saw that yeah I'm just about sorted not just like the cleanup the end so everybody knows what that'll be doing and that's not the thing but yes I'm not worried about anything well from how long this goes on for now anyway who said any different than lines no lion still have gone on all this time with a body right mine done without doing and they're gonna get it can't I like this if anybody says oh he was a just a whinge how buddy isn't huh yeah torn in two different directions you want to be here you don't want to be here because you always feel being here in the position of being a mother that it's difficult for Johnny to be quite honest Johnny do you like your mother being around at the moment now just one thing left Debra his charity has been invited to number 10 and Johnny's going no matter what this could mean serious money I tried I don't think he's fit to it I was told to mind my own business so is that hey buy your own son yes yes I think he feels that this one could bring in the charity a large sum of money because he feels it every hate me that the get its maybe you hate you towards anybody else not having to put up with this or condition even if it kills them that even if it kills him going there yeah that's the way he feels I haven't actually pushed that to him but yes I got that impression [Music] Johnny talks to Cherie Blair and she agrees to attend future Debra fundraisers it's the breakthrough johnny was looking for the next morning Johnny's going home Johnny I spoke to your mum we're gonna get you home on the train okay so just bear with us and we'll sort you out the only time I've ever been sad about death is when I lost me cat and because it was a first pet aha but actually people I know inside that there's more to life than this mortal coil it's a very shallow minded person who thinks that somebody is born and dies and that's it I haven't gone through 30 odd years of suffering and doing what I do and looking at other people who are born and died with cancer with AIDS or that whatever and think well what was the point of that there is a point to everything and we're here to learn and it's just a learning curve and we'll move on and this is just a shell it's just I've got a dodgy show gonna be half the Imam now isn't it she's done she's done her job she's you know she's gone and looked out from to the end don't know what symbolism like Tiger if you have listened to the Queen I'm having a good time like a tiger defying the laws of gravity that's where that's come from and the Tigers the strength friends at this part of our service this is a very special song of Johnny's by Queen Johnny asked me to say a few words cover the months ago my first reaction was he's done it again in your exactly how to get what he wanted and as his brother I've had that all my life and probably many of you sitting out there have been in that position as well and I think that I can speak for all his friends and family when I say that we miss him not because of that wretched body but for his wicked sense of humor his courage and determination and his way of never paying for a round of drinks [Music] [Music] my name is Johnny Kennedy I've told my story and I hope it's given you something to think about I may see some of you around babies in the next life I'm gonna be sitting on the cloud who knows I'm away now [Music] supersonic man out of you [Music] yes

Channel: Real Stories

Views: 990,436

Rating: 4.8656511 out of 5

Keywords: alex lewis, skin condition, extraordinary people, medical documentary, Full length Documentaries, BBC Three, ITV, Documentaries, Amazing Stories, Documentary Movies - Topic, BBC Three documentary, BBC, TV Shows - Topic, timeline, tlc, Amazing Documentaries, Documentary, medical, Channel 5, Channel 4, transgender documentary, Full Documentary, PBS, doctors, medicine, Real Stories, Sky, only human, Topic, Extraordinary people, Movies, BBC 3, documentary, PBS doctors

Id: OUWqyQYkZrg

Length: 48min 3sec (2883 seconds)

Published: Thu Dec 22 2016

Reddit Comments

[u/The_Brightsmile]

Wasn't sure until ".... any knocks or severe friction, such as constant wanking, the skin falls off."

[u/YTTMirrorBot]

Blocked in UK Mirror: The Boy Whose Skin Fell Off (2004) You will both laugh and cry within an hour. ^{48min - 173747 views}

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[u/coachvicbaby]

lol wut a fockin character

[u/Reygle]

I've already seen it, what a cool bloke.

[u/thedrunkdingo]

What a genuinely lovely man. His whole family radiated warmth. I'm sure he's very missed but I'm glad he's free from his pain.

[u/ithappenedsofapp]

I enjoyed the part where he made his own word up to the church hymns ...”I have always been a crap singer & Ive enjoyed the harvest festival”! That and the wanking part! OP was right!