Man With Fatal Skin Condition Plans His Own Funeral | BAFTA-Winning Documentary | Real Stories

Summary

This touching documentary follows Johnny Kennedy, a 36-year-old man with epidermolysis bullosa (EB), a painful and rare skin condition, as he plans his final months. With limited time due to terminal cancer, Johnny aspires to live fully, undertaking adventures and cherishing relationships. The film captures Johnny's humor, resilience, and acceptance of death. It sheds light on EB, his advocacy efforts through the charity DEBRA, and ultimately celebrates a life bravely lived despite overwhelming challenges.

Highlights

• Johnny's unique wish for a tiger and Heinz beans label on his coffin to spark curiosity and conversation among funeral attendees. 🐅🥫
• His humorous take on life's challenges, like when he jokes about picking a pine coffin. ⚰️😁
• The deep insight into his struggles and acceptance of his painful condition, often describing his skin as missing the 'Velcro hooks'. 😌
• Johnny's initiative to make EB more recognized by parachuting from planes and participating in charity events. ✈️
• The touching moment when Johnny's mother reflects on the challenges of raising him and how she would have considered abortion had prenatal testing been available. 🤱
• Johnny's ability to narrate his life with both a sense of humor and a call for societal openness about death. 📖
• Johnny's embracing of spirituality and the belief in life lessons, giving comfort and meaning to his life's hardships. 🕊️

Key Takeaways

• Johnny Kennedy was diagnosed with a rare genetic skin disorder called epidermolysis bullosa (EB), which caused his skin to blister and come off easily. 😢
• Despite his condition, Johnny lived a life full of humor, courage, and determination to make a difference. 💪
• Johnny's journey of planning his own funeral highlights not only his acceptance of mortality but also his desire to leave behind a message of resilience and positivity. 🌈
• His work with the charity DEBRA brought awareness and hope for others suffering from EB. 🎗️
• Johnny's story reminds us of the importance of living life to the fullest and cherishing every moment. 🌟

Overview

Meet Johnny Kennedy, a remarkable man living with epidermolysis bullosa (EB), a condition as rare as his own fierce spirit. With time running against him, Johnny decides to orchestrate his own farewell but leaves everyone with a smile on their faces, including a cheeky plan to put a Heinz beans label on his precious pine coffin. His humor and zest for life were evident even in the face of such painful adversity.

Johnny's story isn't just about a man battling a cruel fate. It's a tale of courage, hope, and advocacy. A tireless worker for the DEBRA charity, Johnny raised awareness like no other, even parachuting from planes and engaging celebrity support. His voice, albeit scarred, left an indelible mark, especially on those who could make a change in the lives of others grappling with EB.

The documentary is a celebration of life and the acceptance of death. Johnny's journey is rich in lessons not only for those with his condition but also for the world at large. With a heart open to spirituality and eyes set on the life beyond, Johnny aimed to teach us to embrace every moment. A true testament to living boldly and kindly, leaving behind a legacy of strength and laughter.

Man With Fatal Skin Condition Plans His Own Funeral | BAFTA-Winning Documentary | Real Stories Transcription

• 00:00 - 00:30 [Music] he want that one on his yellow one he says I want my yellow shirt and I thought oh this waste coat you know which was the one he obviously had on yesterday oh God he is
• 00:30 - 01:00 don't use that he says you can sell that on eBay he says just put me he says the color the bright color one I've cried but he's had enough I saw him on Monday seen him like that was it's sad seeing somebody suffer no it's hard to say but I'm pleased he's gone I am pleased he's gone welcome everybody
• 01:00 - 01:30 my name is Johnny Kennedy I'm 36 you want everybody sitting in the crematorium going what's the significance of the big be there's my mother and next to is 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 and my
• 01:30 - 02:00 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 wanted his last four months to be as extraordinary and uplifting as his Strange Life and asked us along for the ride
• 02:00 - 02:30 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 hello hello there how you do I'm H Johnny Kennedy I'm interested in purchasing a coffin right well I can take you through all the different choices and what's available Johnny's chosen a pine coffin playing sides plain lid like what's on
• 02:30 - 03:00 display in there his measurements 5' 3 have to give a little bit of Tolerance and I would say about 16 18 in wide I would see more proportionally 53 16 5 36 5360 so is that my two sides right what he's got to do now is cut it to length about or I to think that looked big to me I know
• 03:00 - 03:30 go on see that's the uh inate and that's the take easy no one's watching hi is it going to be painful how long will it last am I going to drag on and be a dribbling old fart being in bed and I canot do now all these sort of things I'd rather just go to bed go to sleep pop me cloths over
• 03:30 - 04:00 look at that perfect fit what do you think of that very nice have you thought about what you'd want on the side um well I would like a tiger and uh the far end the hind bean sign you know right okay I think so what do you want there just a tin just a label a label of a big bean so we put hind beans 57 varieties all the rest in the same shape and everything
• 04:00 - 04:30 yeah all right yeah so no problem at all cuz I want people sitting at my funeral ning each other going what's the H being signified I was going to ask you it doesn't mean anything but it'll get them talk won it but do not want the answer on do not want the answer on den no so where would you recommend the sort of keep it I mean
• 04:30 - 05:00 um cuz I'm not using it like straight away a lot of people um if you got an out house or gas I've got a shade I've got a sh shed good I'm not a Nookies I've got different ideas to different people and I can't say that I've had many fears in life cancer doesn't wor me it's just another bloody nuisance Johnny's rare genetic skin condition EB means his skin is constantly coming off and trying to regrow and eventually it develops
• 05:00 - 05:30 terminal cancer people even in this DNA just 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 23° C that is 73 de f as your
• 05:30 - 06:00 weather forecast brought to you by Johnny's become a local celebrity in Northland it's back to the music of your life on your station 107.4 lionart radio and a very good morning to you joined this morning by Johnny Kennedy hi how you doing I'm fine sir how how are you doing there I'm not so bad thoroughly enjoying this and I'm absolutely amazed at all this technology uh mentioned earlier on he's been Afflicted since birth with the horrific genetic condition distopic epidermis
• 06:00 - 06:30 Bosa uh but despite that Johnny has uh is very intelligent Johnny can we just briefly talk about your the condition that you you suffer from indeed yes can you tell us more about it yeah I mean if people have seen me out in the boat um they'll have obviously seen that I look a little bit different from the norm um I don't know who Norm is but I look a little bit different to him basically what it is is there's nothing there to hold or bind the skin
• 06:30 - 07:00 so any knocks or bumps or friction and the skin blisters and comes away I like to see it is the skin is like Velcro so the hooks are missing so any noock or severe friction such as constant wanking just doesn't go well with the condition because it pulls the skin off then you're you've had this condition since birth yeah it's a genetic condition uh both parents have got to have the faulty
• 07:00 - 07:30 Jee and if they pass that down uh you end up with someone with my condition the chances of being born with EB are one in 300,000 both parents must carry the defective Gene when jie was born I didn't see him for two days basically cuz I think they thought he would die cuz I didn't know such a terrible lot about the condition Johnny was brought up in Whitley Bay on the Northeast Coast po at
• 07:30 - 08:00 Birth he had no skin on his right leg from the knee down but from the start he was a fighter I spent a lot of me time just sitting on the uh step in the garage watching me brother play in the front drive cuz every time I seem to play I knocked myself being at that age where you're a toddler your ass seems to spend more time on the ground when Johnny was 13 his father Frank moved the family to Rochester in
• 08:00 - 08:30 North umland a remote Village near the Scottish border you don't go into the pub at lamming time unless you want to hear more about sheep and how they've been sticking their hands up sheep's backsides to turn Lambs around and pull their legs out and their heads out you just don't want as a teenager stuck in Rochester Johnny always hankered after the bright lights of anic nearby Market Town Sunny
• 08:30 - 09:00 Saturday morning from the heart of anic this is lionart Radio I've been told that you love this place is this true it is there's places you can go to in the world and you just feel right and anik is just one of them to me I've been coming back and forward here and it's just always felt my home got a question in here Johnny good morning it's from Dan in anik yeah and he says um tell me more about your charity right okay um it's called Deborah
• 09:00 - 09:30 which when I'm trying to raise money people say hoi um but it obviously stands for the name of the condition with research Association on the end would you like to introduce the next song because well tells me that you're a queen fan as well oh absolutely you're the dish Joy go for it okay here we are in this beautiful summer day at radio lionhart with Queens Don't Stop Me [Music] Now Johnny's thrown portion to the winds
• 09:30 - 10:00 in his efforts to publicize EB parachuting from Planes winning Awards and becoming a driving force behind Deborah the charity devoted to finding a cure for EB I can think of no better person to receive the disabled sports Personality trophy than Johnny [Applause] [Music] Kennedy four years ago with the help of Deborah's money there was a breakthrough eie skin was treated and made healthy in
• 10:00 - 10:30 the lab this potential cure comes too late for Johnny but he's tireless in his efforts Nel mcandrew the Force's favorite pinup supports the charity together they're releasing butterflies to symbolize the condition je butterflies this is Willie that he looks after us or keeps us right whatever yeah so how you keeping not bad not bad bad it's all Rush all go is it oh it is I mean my sister lives up in Newcastle no
• 10:30 - 11:00 no the Metro Center well if you're up in July I'm having I'm having a house woman on the 26th of July you get yourself up there have a proper party I'll get some roing no isn't I got it this time no take it again oh we could be here a while you just St CL like that as I say I hope you do get up north you're always welcome you're not going anywhere no I'll be
• 11:00 - 11:30 here we'll see you later all right cheers a celebrity guest would be perfect for Johnny's House woman I'm EB 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 36y old in a child's body I haven't had relationships cuz I don't think enough of myself to get involved
• 11:30 - 12:00 so I've always just I want better word just flirted just messed about but once things get too heavy and that I 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 which is what they would do I could see right down last t-shirt on she then [Laughter]
• 12:00 - 12:30 I for one you know like a lot of people you don't realize your own strength that's right so you don't think you don't know how much pressure you are putting on somebody's skin I mean my mother and that she likes to give someone a hug and she knows she can't you know it's just a case of putting an arm around you and being there and that sort of thing um but uh so I miss out on a lot you know but it's just life it's just life uh
• 12:30 - 13:00 it's all right it's all right I'm used to it must be really hard just take each day as it comes I mean 36 years and you're just living with dressings and souls 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 AR Liv and people won't have to
• 13:00 - 13:30 suffer like this so as I say you're part of history that make a difference you're not making a big difference look after yourself and thank you for the day welcome cheers bye take care I'll get in fact I've got a little picture for you I'll get it I'll get it I'll wait I'll be here yeah cuz yeah [Music]
• 13:30 - 14:00 the guy is a pro I uh was telling her about the condition and my life and the struggles your use the sub story again I use the sub story again yeah works every time doesn't it AB thank you R you see he knows so uh yeah you got her phone number no but she's got mine which is better than normal
• 14:00 - 14:30 Johnny's best childhood friend is Lord rert reedsdale he's a working peer for the liberal Democrats and should be a perfect speaker at the DIY funeral it's going to be a different funeral and uh I would find it in honor if you would say a few words as a friend at uh at my funeral if you find that you could cope with her well I think I could cope but could you cope with the fact that I'd get the last word you reckon you are you know in one
• 14:30 - 15:00 respect I don't 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 like you're a Lord that's your Affliction and I don't let that get my way I am definely Afflicted with it you are yeah but you made you the way you are now but it doesn't you know it's it's not what actually defines what Johnny is you know me one of the times that I found it hardest when I went up to visit you and and Johnny was in tears you know he just
• 15:00 - 15:30 said I can't take the pain anymore I want to die and and I mean the amazing thing about you is you've you know you've always had this sort of way of not saying that yeah I suppose at times have been hard on people like yourself because you don't know who else to turn to you know when you're suffering and you're hurting and that sort of thing you don't know you're just looking for anything and and not you know you just want to
• 15:30 - 16:00 get away from it so you sort of turn 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 is what it is and it's 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 he say I'm not dying to bloody I know I said the r i says now when I've done all the main fil and I hope they don't want me just to go to bed and lie and die and sort of the cameraman and Sal man's G how are you feeling is he
• 16:00 - 16:30 dead yet no I'm feeling better don't give him any more water are you feeling sleepy [Music] son 10 months ago just across the river at St 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
• 16:30 - 17:00 whatever happened for however long it may be I wanted to spend time where I always wanted to be which was over in anic Johnny has a team of Round the Clock carers whilst his mom is a regular visitor do you know if we'll put them all together we going have little minis little little me well not more oh that's that's a big that's a good one oh that's your oh there's your
• 17:00 - 17:30 chest it was September the 11th last year when he was diagnosed with the tumor and that was it he was off I remember we left the hospital and and we were on Westminster bridge and you said where do you want to go yes and I mean I'd been given the most to whoever you are the most devastating news mhm and I just shut my eyes I could feel the breeze from the river and the sun on my
• 17:30 - 18:00 face not h yes it wasn't an easy time for for
• 18:00 - 18:30 that's why I would probably say where do you want to go because I was lost yeah as well totally lost basically you can't believe it really although you know it's true and the 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 have any any
• 18:30 - 19:00 surgery everything was happening new house getting me Independence back all of it's coming around and then you get kicked in the bollocks when it comes to somebody saying right Kennedy you've got cancer uh stick that in your pipe and smoke it I believe that we'll all come down to earth to learn lessons and that Earth is
• 19:00 - 19:30 a classroom I feel I came down to understand what it is like to be in this Comfort all your life to learn about frustration and possibly overcome that in one another I know in my heart what I believe I've
• 19:30 - 20:00 been to different religions a bit like a pick and mix I know what I'm comfortable with I believe in a God and that's it I never knew the words I was always a cop singer the spiritualists believe that there's life after death and they have the Open Circles where they bring out Doris down or Uncle Bill and they give a
• 20:00 - 20:30 lot of comfort to a lot of people never enjoyed the Harvest they may be uplifted mind and body and and spirit before they leave these it's this belief in the afterlife that has 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 beanie green Shields ever since she's First Choice to host the
• 20:30 - 21:00 funeral Johnny can I just say to you I've been aware of a gentleman nearly all week for some reason and as a gentleman I feel you would have walked on the Hills now it's not your father no no all right just before I leave you can I give you um an Alan dog you can no no then I'm not with you John so can I just say thank you good God bless thank you well you know I've asked you and George to to sort of conduct the service I do yes so I've
• 21:00 - 21:30 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 hoping she bring a smile to people's faces so it should be quite good well I suppose it it's closer to home now um yes it is it's getting very it is yes and all you want to do is have somebody somebody with you to take the hand and
• 21:30 - 22:00 say and reassure it that this is going to be all right it's sometimes I think it's a matter of someone saying to you Now's the Time giving you the permission really is it if people would look Beyond mhm what they see and look into you mhm and see the spiritual side and the the person you are rather than what this they're seeing on the out sh part yeah
• 22:00 - 22:30 they would see a lovely Soul right or lovely [Music] Spirit you say do you know if you've learned your lesson or do you go to your maker and he goes ah you boobed you didn't learn that b you'll have to go down again and do it all [Music] 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 all the people when I'm out in
• 22:30 - 23:00 the street I don't get frustrated when they say what's wrong with you can I hold a door for you I don't say oh [ __ ] off I'll manage [Music] myself Johnny's only had one day in his life without bandages 75% of his body is covered in SS and what's the cycle of the bandage changes oh once a week you
• 23:00 - 23:30 mean uh on the back the other ones just as uh really needed oh Jesus do something please don't just sit looking at this even after 36 years you
• 23:30 - 24:00 need to get your head around the severe discomfort and pain just gently easy slowly slowly gently something feels stuck down here yeah due to the constant scarring the skin has closed up over Johnny's hands and feet making them useless that's it one you inside I'm fine
• 24:00 - 24:30 have I got hold of everything I think so I think that's an extra piece D what are you doing oh you not one [ __ ] sry sorry just it
• 24:30 - 25:00 I sometimes look back and wonder how how you how I've managed to be quite honest but you do if you work day by day you it's a job you get on and you just get it get it done if you can imagine picking up a newborn baby the be fed to be changed
• 25:00 - 25:30 and every time you pick that baby up you're blistering it godou St sorry I was asked one time if I would carry on with a birth 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
• 25:30 - 26:00 born it's disabling a whole family there's now an interuterine 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
• 26:00 - 26:30 these children have to go through I'd rather that Johnny had been born no physically all right healthy but no I don't I'm not sorry he was born Bas the person I feel 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 them and fight with them and play with them in the way two normal healthy boys be able to sorry where am I not in the right
• 26:30 - 27:00 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 um and I couldn't do anymore 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 well I mean we're
• 27:00 - 27:30 each carrying the Jean so we were each as responsible as the other but uh Johnny often feels he missed out on a lot actually okay yeah I'll do my hand a bit later some nights are better than others I
• 27:30 - 28:00 kind of catnap more than anything you know you kind of uh sleep for a bit and then I mean most people I think it when they turn over it's an automatic reaction where when I turn over to Major exercise so you wake up and you turn over oh it's just you stick if a bandage comes off or something like that you can stick to the bed your head sticks to the bird
• 28:00 - 28:30 here okay okay I'm going 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 or whatever you couldn't c l
• 28:30 - 29:00 yeah right picture of this everybody picture of this right shut your eyes we're on this mountain side right and it's a nice warm the blue skies that's the OD white fluffy Cloud passing by but basically it's blue skies slight breeze and you're sort of sitting next to a stream and the water's so clear you can hardly see it but you can hear Rippling by and just let
• 29:00 - 29:30 the branches of the tree sort of fan you and I sort of go somewhere like that and it's just peaceful and everything's [Music] L there okay anybody
• 29:30 - 30:00 no to the left and weid bu [Music] [Applause] [Music]
• 30:00 - 30:30 W can't [Music] laugh exciting isn't it yeah just just Sail Free for a minute just let me get myself compost okay not die and become Spirit again
• 30:30 - 31:00 right and the soul is free I think i' get bored if the say little angels sit on clouds plucking their little hearts you know in that old day I'll be up there getting them off their clouds doing drops of 1,000 ft then pulling up I think you need to space things up a bit
• 31:00 - 31:30 get away from me face 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 going to be a good day this is not going to be a good day he was a very fit man he liked to cycle and rock climbing and he didn't drink he like the occasional pipe or cigar if he could scr it off me he just found the whole situation of me
• 31:30 - 32:00 just a total embarrassment in those days little was known about EB and Frank tried several home remedies including saltwater baths and exposing Johnny's saws to Fresh Air what's me think about flies 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
• 32:00 - 32:30 flies hand feed bloody if we're sent down to learn lessons I don't think he learned his 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 as to what life was was all about but that was uh
• 32:30 - 33:00 was just manic down there but as the same iies it was him he knew that that would send me ping so maybe she doesn't want the word I mean you used to have a joke my dad used to go in the bedroom to check with him in the morning he would say I'm still alive hi and that became a that became an ongoing joke I mean great your father thinks you're going to SN it every night think you going to
• 33:00 - 33:30 bed well that should have done it I've got them and if I had anything living on me it's dead jolly good if you open your wallet I'll spray the M I'm not just having any ordinary funer so as I say no I'm organizing the proper going to be warned beforehand well love drop point a lot of people know who and what I've got organized so it'll all just hopefully
• 33:30 - 34:00 fall together and that's what I was going to ask you J I've got to have some family say something the mother's not going to be a f St oh B you can say something you can say thank God that old F's gone you're not recking I must admit it's another one of those
• 34:00 - 34:30 fantastic things you've asked me to do but I I feel it's important to have some family speak for me to say something but I'll have to say nice things that's should be you I'm not going to be there but I'll come and haunt you so I've got to say nice things are you worried like find something nice to say
• 34:30 - 35:00 as long as he stands there and says a few words he can say what he likes I don't mind but just to know that my brother stands in front of everybody and at least thanks him for coming and says I was his brother and uh that'll do 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 relief but it'll be a relief for me as well so
• 35:00 - 35:30 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 nail it's just a natural picture the C we're chanting I've got a butly what the butterflies on the top no on a head that was just a headband kind of thing um she's got a deborra necklace on which is as to keep it's just a really natural shot I think it's really
• 35:30 - 36:00 good lots of color and tast very nice isn't it it is actually thought I might have that Fred and put in the conservatory oh good idea isn't it mhm did you fancy now mandre yeah she's a very nice lady fancy um what's not what's not to fancy I mean yes Johnny isn't finished yet he's still
• 36:00 - 36:30 determined to host his housewarming party and visit number 10 got you there we are success today [Music]
• 36:30 - 37:00 [Music] [Applause] let me how heavy is it well you can hold it wa look at that and the conservatories on that's great
• 37:00 - 37:30 thank you that's brilliant I have to see your mom did us proud again didn't let us down not that I ever thought you would that's your present the brother did a stunning job with the barbecue well I know I couldn't have done it without him but that's what families are for well it's odd you know cuz everybody's here K well it is a housewarming but in one respect it's
• 37:30 - 38:00 also everybody's coming to say goodbye to Johnny and cuz he's got friends from all over and it's I suppose it's had this this odd feeling because it is quite bizarre you know and everybody's been talking about it but it's it's got a nice feeling as well about it because of it's very relaxed and very friendly don't be sure look up you look after yourself how are you I'm all right Managed IT
• 38:00 - 38:30 great did we me directions okay very good very good we didn't know what to get you we didn't know what you have so to round off the day Johnny's VIP guest has turned up you that's very kind of you you know that what my mom said that day talked about it ever since and um just any you know like talking to you really made everything even more clear cuz she was saying just anything that you know
• 38:30 - 39:00 is a help and that's what you know that's what really makes a difference does so so you'll be pleased to know I'm going to run the marathon for you next year oh yeah great because you've inspired me to run the marathon I'm sure thank you very much so I'm scared today I am I really am I'm thinking how on Earth I'm going to get all the way around but um you know I mean you've done what parachute jumps you've done your trolley I was gliding I had me gliding doing l theop o gosh stunt man maybe that's you know new yeah new ker
• 39:00 - 39:30 new ker yeah EV stunt man first ever we got it there was a few highlights but obviously n came if that's what you're getting that oh it makes it more special yeah it really does to get everybody together and uh see everybody cuz yeah you don't know if it'll be for the last time or or whatever again it's death and it's part of death leaving people so we all know
• 39:30 - 40:00 that my mom knows that my brother knows that okay I'm immigrating 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
• 40:00 - 40:30 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 uh there's nothing much you can do uh I sorted I'm I'm just about
• 40:30 - 41:00 sorted I just like to clean up the ends everybody knows what they'll be doing and that sort of thing but yes I'm not worried about anything apart from how long this goes on for now anybody who says any different that Liars the Liars to have gone on all this time with a body like mine done what I've doing and they going to get cancel like this
• 41:00 - 41:30 if anybody says oh he was a just a winge I I believe them huh you're 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 diff more difficult for Johnny to be quite honest and Johnny do you like your mother being around at the moment sometimes that's a political
• 41:30 - 42:00 answer now just one thing left Deborah his charity has been invited to number 10 and Johnny's going no matter what this could mean serious money amaz he's gone London so am I I tried I don't think he's fit too but I was told to mind my own business so I am doing just that hey by your own son yes
• 42:00 - 42:30 yes I think he feels that this one could bring in the charity a large sum of money because he feels that for every hate me that they get it's maybe a hay towards anybody else not having to put up with this awful condition even if it kills him going there even if it kills him going there yeah that's the way he feels I haven't actually voiced that to
• 42:30 - 43:00 him but yes I got that impression Johnny why is it so important to go to Just Another [Music] place
• 43:00 - 43:30 Johnny talks to Sheree Blair and she
• 43:30 - 44:00 agrees to attend future Deborah fundraisers it's the Breakthrough Johnny was looking for the next morning Johnny's going home Johnny I spoke to your mom and we're going to get you home on the train okay so just bear with us and we'll sort you
• 44:00 - 44:30 out the only time I've ever been sad about death is when I lost me cat um because it was the first pet I had 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 through 30 odd years of suffering and doing what I do
• 44:30 - 45:00 and looking at other people who are born and die with cancer with AIDS with 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 to dodge you shell
• 45:00 - 45:30 it's going to be hard for you Mom now isn't it she's done she's done her job she's uh you know she's gone and looked after him until the end I don't know what the symbolism of the
• 45:30 - 46:00 tiger the 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 tiger is 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 a couple of months AG ago and my first reaction was he's done it again he knew
• 46:00 - 46:30 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 a good time having a good time should stoping through the sky like a
• 46:30 - 47:00 tiger the [Music] ofing I'm going there's no stopping me I'm burning through the 200° I'm tring theet of super
• 47:00 - 47:30 you don't stop it don't stop it don't stop [Music] [Music] it my name is Johnny Kennedy I've told my story and I hope it's giving you something to think about I may see some of you around maybe he's in the next life or maybe
• 47:30 - 48:00 sitting on the cloud who knows I'm way now that's why they call me Mr fire P tring the speed of light I want to make a suic man out of you now I'm having such a good time I'm having a ball Don't Stop Me Now if you want to have a good time just give me a call don't stop a good time don't stop
• 48:00 - 48:30 me