The Boy Whose Skin Fell Off

Posted by | March 25, 2004 | Uncategorized | 48 Comments
“People, even in this day and age, are 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 organise it like you would organise an anniversary or a birthday? Let’s get it right.”

Channel 4 really pull out some crackers sometimes. True, it was morbid, and maybe a touch voyeuristic, but The Boy Whose Skin Fell Off showed the last 4 months of Jonny’s life, as he courageously battled an awful skin condition that developed into cancer. He had a ball though – planegliding, hosting a houseparty, even visiting 10 Downing Street. He was also the narrator – and was all the more moving as he had the amazing prescience to narrate his own funeral. Humourous, uplifting, courageous and even to the end raising money for his charity DEBra – there was a big man inside that distorted body.

48 Comments

  • Matthew Price says:

    I am just 15, watching this programme touched the depths of my heart. Jonny was so inspirational, he clearly wasn’t frightened of death and he had such good morals! I think this programme must be one of the most upseting ever screened on television. Jonny’s message at the end really set me off into tears, everyone who i’ve spoken to has said how upsetting it was for them aswell. A tremndously brave person with an amazing family and story!

  • Hannah Hugglestone says:

    I totally agree with Matthew Price. It touched my heart deeply and i began to shed a tear or two at his funeral. I am also 15, and when i came to tell my friends the next day they too felt great sympathy.
    Even though considerably emotional, i thoroughly enjoyed and understood how Jonny was explaining everything, as i don’t think anyone will be able to say they know what he went through.
    xxxxxx

  • Helen says:

    I watched the programme about Jonny simply because my brother was Jonny’s friend. I’m glad I did. Sad? yes. Inspirational? definately. I’m donating to DebRA from now on.

  • robert rowley says:

    how can i find out about the charity and can you sent some info to my email account

  • Catherine says:

    I watched the programme in school, with my science group. At the end, not one person in the room, including our teacher, had not cried. Myself, I found the funeral particularly moving, how Jonny managed to exhibit his wicked sense of humour to the very end. It was an amazingly emotional and inspirational documentary and has inspired me and a few friends (also in my science class) to organise a lot of fund-raising evets for Debra, the charity for research and treatment of Epidermolysis Bullosa…. And just for reference, the charity’s website is: http://www.debra.org.uk

  • Nataly says:

    I havent the movie yet but when i saw the commercial yesterday i decided i was going to get on the computer the next day and find out more about him which i was doing right now and thats how i found this site. when i was reading about him and looking at a picture of him on the internet i just started crying. even thought i am just 13 yrs old i have a big heart and i am very sensitive to things like that.

  • jean says:

    i will be seeing this soon. i hear it is a moving and touching story. i cant wait to see it.

  • Paula Makepeace says:

    I just happened upon a show about Jonny Kennedy last night while channel surfing. Right away I got such a kick out of Jonny and felt as if I had known him a long time. Many people have said that they shed a tear during the funeral. I did not find the funeral anywhere near as sad as the changing of Jonny’s bandages. He was such a strong little guy with such a great outlook on his life and his pain, yet changing the bandages hurt him so intensely that it could make him cry. I spent many hours last night agonizing over that one scene. Couldn’t they have put some sort of cream or something between him and the bandages to keep them from ripping his skin off? Jonny certainly lived every minute of his life to the fullest, even letting the public share it with him until the very end. The brief hour that I spent last night enjoying immensely that little ball of fire know as Jonny Kennedy will stay with me for the rest of my life. I’m sure that before his soul was even completely free of his tortured body, he was reveling in his pain free afterlife! Cheers to you Jonny Kennedy!

  • Jane Erdmann says:

    this show just was so emotional i don’t normally watch them but it was really interesting it touches me and i think that it would be awful to have EB and for me having ADD is enough, i cannot stand it but having EB i would not be able to stand it. Jonny inspires me and i would have loved to meet him! I think that his quote
    “People, even in this day and age, are 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 organise it like you would organise an anniversary or a birthday? Let’s get it right.” means a lot i hate thinking about death but the way he looks at it it seems he was looking forward to it! it is amazing how he wanted to make this documentary on himself.
    xoxoxo

  • Tau Battice says:

    What a man! Many of us groan and complain about our little inconveniences and fail to give God thanks for all the good we have.Jonny is proof that we should ever be grateful for our blessings.

  • Donna says:

    Thank you Jonny for opening my eyes. Rest in Peace.

  • allissa says:

    johnny is the most important thing in my life…..wen im older imm donating

  • Tabitha says:

    Wow! How amazing to have someone face life and what it gave him upon entry – walk with stride and embrace his own death. Something very few in this world can or are willing to do. My entire spirit was touched by Jonny. His openness to accept life as well as death with arms wide open was a true example for everyone to follow. My heart goes out to all involved in his life and others who face this. My soul smiles to know there are people like Jonny. Bless his courage and WIT! May we all see our lives differently! I only wished I could have met him and shared a beer at the pub with the bright soul!

  • Katrina says:

    Johnny openend up my eyes to accepting death a little more than I previously had. He was very heroic making this film and I thank him for letting us into his life for those months that he had. Rest In Peace Johnny, and we will see you up there.

  • Sarah says:

    from the moment i started watching it, i couldnt stop crying!!its so sad, but he still lived life to the full!loadsa sympathy for his mom and dad, although he was frustrated by johnny’s disease-putting him outside allowing fresh air to his wounds was horrible!though it is very hard to accept! his brother and carers were also very kind!AN INSPIRATIONAL STORY!

  • Mary says:

    Your’re an inspiration. Tell my DAD I miss him, and thanks for the BLUE BUTTERFLY!!!!!!!!!!!

    Keep them coming.

  • Clare_R says:

    What can i say Jonny, I was watching this programme last night and i was not expecting to come out feeling the way i did after watching this amazing man. You have made people very proud to have known you.
    I thought Jonny was brilliant everythin he said made me think. It was strage became the programme made me laugh and made me cry he was so funny. Very strong man and i felt for him…..Wish i had known him. I am going to try and donate to debra. RIP jonny you are an amazing person who i know i will never forget you made me think about me and all the moaning i do and me thinking i have terrible things happen to me but then you was going through a terrible time and still had the chance to put a big smile on your face, have fun and be happy (Jonny made me laugh when he was arranging his coffin and he was like iw ant the beans sign so it can get people at my funeral wundering why i have it there)I cant say i knew him becauise i didnt and i only saw a 1 hour prgramme but what i did see of Jonny he was amazing. Jonny has touched so many people’s hearts in a big way and made people think about life (you have made me think) You are great and will never be forgotten. Clare.

  • Brian E says:

    Watched this documentary last night after Channel 4’s top 50 of all time. I had not heard about this before and was utterly blown away by the spirit and courage this man showed throughout his life and in particular the last 4 months of his life. I will be telling everyone I know about this documentary and why they should watch it – to help us out into perspective our own lives and to do what we can to help others who are less fortunate.
    Brian, 26, Norwich, UK

  • Clare_R says:

    I agree the more people start to help out the better
    Clare.18.uk

  • Clare_R says:

    I agree the more people start to help out the better
    Clare.18.uk

  • Russ J says:

    What an ispirational guy! He put on a brave face through what can only be described as an utter stinking existence. May you all watch this program when you feel like nothings going right and the worlds against you!

  • Clare_R says:

    I know what you mean by that, watch the programme when you feel down and thinking you have a hard life.

  • sarah says:

    what a guy jonny kennedy was, i was watching with tears in my eyes. his courage in the face of all his problems should be an inspiration to all off us, incidently isnt Nell McAndrew wonderful, not many celebrities would have taken the time to go to the housewarming party. god bless you jonny, hope your at peace now.

  • Martin Cheung says:

    I saw the show on Sunday night and it was perhaps THE most powerful and moving story I’ve ever heard and seen in my life. I used to suffer from eczema but nothing remotely reaching any degree of the torture that Jonny had to go through constantly. Watching his mum chaning his bandages upset me and put me off my food but I can’t even begin to imagine what Jonny and his family went through.

    I feel so humbled and the first thing I said to my girlfriend after the show was that after watching that, we can’t possibly have any right to complain about anything. And I’m convinced his mum is an angel too! Although I found watching him suffer immensely disturbing, I couldn’t pull myself away from watching and the film was so beautifully made. Jonny’s humour throughout was just awe-inspiring, and I read an article on The Times website yesterday where his mum said that Jonny had a profound effect on everone he met. I can truly say now that he’s made one of the deepest impacts of anyone I’ve ever heard of, and I didn’t even meet him! It was hearbreaking to have to see someone literally being tortured like that and so often we ask ourselves “What have I done to deserve this?” and Jonny’s mentality was to take it and accept it. As he says, “death is freedom. Life is a lesson”.

    Jonny you were and still are and will always be a hero to me, and wherever you are now, I’m sure it’s a better place because you’re there. May your soul rest forever in peace.

  • Gill says:

    What more can I say. When someone so ill as Johnny can make me laugh to the extent of tears rolling down my face with his witty humour. I feel upset that I never had the chance to meet him but, hopefully in the next life I will.
    Rest in Peace.
    Gill

  • Clare_R says:

    I think what we can all say to Jonny is Respect and RIP

  • Khristy Nguyen says:

    I, too, was channel surfing last night when I came across “The Boy whose skin fell off”. At first I was incredulous to see a man with Johnny Kennedy’s condition live so long. That shows me that he was a strong man who didn’t want to give up fighting until the end. I’m glad that this piece of film is shown internationally because I’m all the way from the Bahamas watching it! Johnny Kennedy is an inspirational man. He makes us realize that we cannot complain about the little things in life but appreciate them and be thankful that we’re alive. He said something like, “everything in life has a purpose”. I think so too. He will always be a part of my memory. Hope your having a good time sitting on top of that cloud Johnny!

  • Khristy Nguyen says:

    I, too, was channel surfing last night when I came across “The Boy whose skin fell off”. At first I was incredulous to see a man with Johnny Kennedy’s condition live so long. That shows me that he was a strong man who didn’t want to give up fighting until the end. I’m glad that this piece of film is shown internationally because I’m all the way from the Bahamas watching it! Johnny Kennedy is an inspirational man. He makes us realize that we cannot complain about the little things in life but appreciate them and be thankful that we’re alive. He said something like, “everything in life has a purpose”. I think so too. He will always be a part of my memory. Hope your having a good time sitting on top of that cloud Johnny!

  • Michael says:

    The whole story so inspirational yet sad………. I looked at the life of Jonny as one of hope and dignity. I felt so inspired to do all I could do for myself and never let a day pass without doing things that needed to get done. He also taught me nothing is impossible; Last but not least, there is no need to be afraid of dieing that’s where life takes us.

    Jonny; they had said in your documentary that physically you had the body of a boy and yet all I saw was someone with so much wisdom that if you were still with us we could all learn so much from you. You were a brave Man with a great soul and I hope the song plays on for you in heaven (Don’t stop me now).

  • Bethany says:

    This documentary/movie was so amazingly inspirational. My sister passed away at around the same time of EB and I just could not stop crying. What with the baked beans on his coffin, and the closing of the curtains around his body to the music of “Don’t Stop Me Now”, I was overwhelmed. On the aniversary of my sister’s death, the same song came onto the radio when I first turned it on, and I just knew that Johnny was with me that day. I will never forget Johnny Kennedy.

  • Alyce says:

    i saw the documentary last night. i wish i could have met jonny, he was quite a fire cracker. i cant even imagine the immence pain he went through. i very much look up to Jonny and i will be donating to the debra foundation. he was truly a genuine man, he made me laugh and cry at the sametime. Jonny will forever be remembered in my heart.

  • Ashley says:

    I watch the documentary and I can’t even belive that someone could go threw that. He makes me realize how lucky I am to be alive and to be healthy, God bless his family.

  • Ann Johnson says:

    Jonny, I pray that you and Mercury are sharing a cloud and some laughs. Your suffering was not in vain. We will never forget!!

  • Angelica Reyes says:

    Rarely am I ever truly touched by anything on television, but Johnny Kennedy’s struggle with DEB has greatly touched and inspired me. I was channel surfing when I came across his story, and I don’t recall a moment where my eyes were dry. Never have I seen anyone so brave to endure what he went through all his life. What really touched me about Johnny’s life was his wit, immensely uplifting spirit, and commendably brave outlook on life. He has taught me to be more appreciative of my blessings and of life in general. Rest in peace, Johnny. May heaven be what you want it to be, and may God enjoy your contagious sense of humor.

  • Jeni says:

    Thank you for all you did jonny, R.I.P,
    You’ve touched so many lives,
    I found out about DEBRA through school, and I want to say you touched our class,
    And your mum is an amazing woman,
    Thank you for living your life to the full, I hope I can as well,

  • Natalie D. says:

    I have seen the show about Jonny Kennedy twice. And both times I found myself in tears! I know that wasn’t the purpose of Jonny’s autobiography, to make people sad, but he definetly instilled in me a new sense of life. I think everyone who watched Jonny’s show was left with just a little more appreciation for life and hopefully some motivation to live life in a more positive way. I would love to just go on and on about all the good things I think about Jonny, I wish I could have known him personally. Cheers to you Jonny, I hope you’re sittin on a cloud right now, plucking your harp with the sun on your skin and the breeze on your face. And as for Jonny’s mother, I think you did an excellent job, not only taking care of Jonny but raising such a high spirited and admirable son.

  • dianne says:

    sorry………………………..

  • jay walker says:

    everything that everyone has said about how they felt watching this brave man is so so very true. i just so wish that i could of met him.

  • vicky says:

    i havnt as yet watch the documentry on tv i am waiting for it to be aired agiani have look through the internet and researched him though and by watching little clips and the directors commentry i learned he was a true inspiration to any one and everone.he was a brave man but his soul will live on in everyone.he was a brave man to share his experience.he wasnt afraid of anything.xxxxxxxxxxxxxxxxxxx

  • Bob says:

    I watched this show recently when it was shown in Canada. After being a police officer with the Ontario Provincial Police for 15 years and having seen or been involved with many disheartening or morbid investigations; and being the rough and tumble kind of sports guy; I discovered I’m not as tough as I thought. This show actually brought on some tears. While sad, it was also uplifting. As a die-hard Queen fan, now everytime I listen to “Don’t stop me now”, I am reminded of Jonny.

  • Cassie says:

    IT MADE ME FEEL VERY SAD

  • Tre says:

    It was very sad reading this. I havent seen the show yet but i had hoped to but i just missed it. When i read it my fimanine came out. I just wanted the family to know i will be preying for them with love Tre

  • Alida Rester says:

    Im only 13 but Jonny’s story really touched me THAT IS REALLY SAD THAT HE HAD 2 DIE AT SUCH AN EARLY AGE!!!!!! I JUST WANTED TO SAY I AM VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY VERY SORRY ABOUT UR LOST BECAUSE I KNO HE WAS A VERY INTELLEGENT AND SWEET MAN

  • lacie M. says:

    OMG! He is such a tremendous man for having the courage in his dying hour to keep fighting for his cause. I am so touched that people are finding out about this disease and are trying to help. I applaud all the people who helped make the show and most of all I applaud Jonny and his family for allowing these last hours of his to be caught and to give courage to others.

  • Chris says:

    I watched jonnys story when it was originally aired on channel 4. It was the most moving thing ive seen in a long time. The courage displayed by such a remarkable young man and his family was overwhelming. I cried a lot. Now, every time i hear the queen song “dont stop me now”, the emotions i experience are undescribeable! It makes me put my life in perspective every time i hear it. I never knew jonny, but he has touched my life as im sure he has many others. I hope when the time comes that i have just a tiny amount of his courage, and i know ill be fine. Thank you. x

  • Michila says:

    Awhh my me and my boy friend were 14 years old when we watched this document. I was so touched and so was he, Jonny was a guy who made life funny, he made me laugh a few time but it was the fact that it was happening not only to him but to other people that broke my heart. by the end of the show i cried, i felt like i knew him personally. and that i just lost a close friend.

    Does anyone know when that show would be aired again in 2006?? i’d love to watch it again. & get others to watch it too..

  • I just watched the show and I must say, I am going to remember this for a very very long time. I can’t even put into words how this has affected me.

    I am going to be up all night worrying about the pain he endured!! The parts that showed him hunched over with his head down was intensely sad for me. When he couldn’t put his hat on and dropped it…

    I can’t even imagine what he went through physically and emotionally. I am nearly in tears now as I type this!

    Wow, he was so incredibly intelligent, courageous, good-hearted and funny. I too wish I knew him!! Of course we all know he is “Spicing things up a bit” up there in Heaven. His story was so inspiring it makes me want to be a better person!

    I am going to find a way to donate and put a link to this most worthy cause on my MySpace page and my website!! Then when I get done doing that, I am going to find a way to purchase the video!

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