I couldn't hold back the tears when I watched this beautiful documentary. It was heart-breaking, disturbing, and inspiring all in one. I recommend this documentary to anyone seeking something that will make them think about what they are doing with their own lives. Or simply, something that will make you think. You watch as John lives through the last couple months of his life. You watch as he goes through his days with a positive attitude. At one point you begin to see that he is truly an amazing individual. You begin to understand that he has something to teach all of us. His life and struggles will make you cry, laugh, and find that life's a lot easier to live if you just take it one day at a time.
13 Reviews
Literally laughed out loud and cried many tears
haideesemail23 August 2005
Was flipping around the TV and HBO was showing a double whammy of unbelievably horrendous medical conditions, so I turned to my twin sister and said, "Hey this looks like fun," - truly I love documentaries - so we started watching it. At first I thought Jonni Kennedy was a young man, but then it was explained that due to his condition, he never went through puberty, thus the high voice and smaller body. He was on a crusade to raise money for his cause. He had the most wonderful sense of humor combined with a beautiful sense of spirituality... I cried, watched some more, laughed, got up to get another Kleenex, then cried some more. Once Jonni Kennedy's "time was up" he flew to heaven to be with the angels. He was more than ready; he had learned his lessons from this life and he was free. I highly recommend this. If you do not fall in love with this guy, you have no heart.
Awareness beyond belief
matt-griffiths20 October 2005
Warning: Spoilers
I have a two year old son who suffers from the same condition as Jonny Kennedy. I never got the chance to meet him but I have never heard anybody say a bad word about him. I hope he knows how much the making of this programme has helped his fellow sufferers by raising awareness of this terrible condition. This man has touched people in a way that a million charity leaflets could not. I believe that this should be compulsory viewing in schools. I also agree with other comments - what have I got to moan about? He took everything that life could throw at him and still managed to retain a sense of humour. God Bless. I couldn't watch the part that showed his dressings being changed. I have enough trouble with my son's.
An intensely moving and inspiring documentary
bob the moo23 October 2005
In 2003, Jonny Kennedy finally died when his dystrophic Epidermolysis Bullosa gave way to terminal cancer. For the last year of his life, Jonny knew what was coming and set out to make the most of what little time was left. He moves into his own house, continues his lifelong charity work to raise awareness for others with his condition, plans his own funeral, learns to fly, visits Number 10 and has a big house warming party. During this period he is followed by a documentary film crew making a film about him.
The last few years have seen lots of documentaries getting a lot more exposure on television and cinemas than other years and I have seen as many of them as I have been able to. However none of them have impacted and moved me as much as this one did. The idea is simple a dying man with time ticking down makes himself the subject of a film as he tries to do a few things before he dies. The cynical will see a self-focused person trying to get their last shot at fame however they would be way off the mark with that view because the reality could not be further from that. In reality Jonny comes over as entirely unselfish, having suffered his entire life against a challenge that many of us would not be able to cope with. The film is focused but it also manages to paint a back story really well; so we know Jonny's work and drive to help others even though he has every excuse not to.
Being so tightly focused on Jonny means that the film succeeds or fails on the back of him and the fact that it succeeds is credit to what an inspirational character he is. He is very much a Northerner and his rough good humour and kindly nature shines through no matter what. He has a great gallows humour and it makes him all the more appealing and inspiring that, although he is clearly in pain and ready to embrace death, he can still laugh at himself and somehow managed to get through it. The film wisely makes little fuss over his death (in fact the first time we see him, he is already dead); I say wisely because the film has so much emotional impact throughout that it has no need to milk the funeral. As well as the personality, it throws up lots of interesting debate over abortion and related issues but rightly the main thing it does is move you.
Overall a film that is difficult to do justice to in words. Well, actually it is not the film that is brilliant but Jonny himself Collerton has made a good film but really the impact, the emotion and the value comes from Jonny as an inspiration man. A hard film to "enjoy" in the normal sense but an experience that will stay with you long after you have finished watching it.
The last few years have seen lots of documentaries getting a lot more exposure on television and cinemas than other years and I have seen as many of them as I have been able to. However none of them have impacted and moved me as much as this one did. The idea is simple a dying man with time ticking down makes himself the subject of a film as he tries to do a few things before he dies. The cynical will see a self-focused person trying to get their last shot at fame however they would be way off the mark with that view because the reality could not be further from that. In reality Jonny comes over as entirely unselfish, having suffered his entire life against a challenge that many of us would not be able to cope with. The film is focused but it also manages to paint a back story really well; so we know Jonny's work and drive to help others even though he has every excuse not to.
Being so tightly focused on Jonny means that the film succeeds or fails on the back of him and the fact that it succeeds is credit to what an inspirational character he is. He is very much a Northerner and his rough good humour and kindly nature shines through no matter what. He has a great gallows humour and it makes him all the more appealing and inspiring that, although he is clearly in pain and ready to embrace death, he can still laugh at himself and somehow managed to get through it. The film wisely makes little fuss over his death (in fact the first time we see him, he is already dead); I say wisely because the film has so much emotional impact throughout that it has no need to milk the funeral. As well as the personality, it throws up lots of interesting debate over abortion and related issues but rightly the main thing it does is move you.
Overall a film that is difficult to do justice to in words. Well, actually it is not the film that is brilliant but Jonny himself Collerton has made a good film but really the impact, the emotion and the value comes from Jonny as an inspiration man. A hard film to "enjoy" in the normal sense but an experience that will stay with you long after you have finished watching it.
I laughed, I cried, and I regret I never knew him....
Lindsay18558 December 2006
This man is nothing short of amazing. You truly feel as if you have lived his life with him throughout these tragic events, and cry along with his family in the end. He was so passionate about his cause, not just for himself, but to ensure others who will survive him do not have to go through this wretched pain. I watch this video every time I am having a bad or "down" day, and it always manages to make me see the great and brighter side of life, just like Jonny did, even with his unbearable pain. My only regret is not knowing about Jonny sooner, as I visited England 2 times during his life, and would have been able to say I'd met him. It is comforting to know Jonny is sitting on his cloud, pain free! Rest in peace, Dear Jonny. You deserve it!
Brilliant!
paintingwithlightst12 April 2007
In September 2003 36-year-old Jonny Kennedy died. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) - which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer. In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full. Produced and directed by Patrick Collerton and first shown in March 2004 The Boy Whose Skin Fell Off has become the most talked about documentary of that year. It attracted nearly five million viewers and after the screening the public donated over half a million pounds to Jonny's charity, DEBRA. A Jonny Kennedy Memorial Fund has been set up to raise another half a million with the aim of ensuring that Jonny Kennedy left a one million pound legacy.
Amazing Documentary
completednow15 September 2005
This is probably the best documentary I have seen in a very long time. Jonny Kennedy was and is still is a tragically beautiful inspiration. Not only was he a survivor of one of the most painful diseases out there, but he used his beauty to show the world that there is life after death and never to give up reaching people and spreading his love. Watching minutes of his life long struggle was heart-wrenching. Listening to his smart ass remarks and seeing his adorable gestures was heartwarming. And seeing him smile was indescribable. I feel blessed to have been able to be touched by this tiny giant. Please, if you ever have a chance to watch this film - consider yourself lucky to have met Jonny Kennedy.
Inspiring
nathansmithba-287-1085587 March 2012
A remarkable documentary about a truly remarkable young man who faced utter adversity everyday of his short life and met that impostor with strength and humor. Therer are some uncomfortable viewing scene's but John's disease and the suffering he endured constantly is not easy viewing. Look beyond this and find a spirited, rounded, funny and courageous soul trapped in a ravaged body. I watched this and left it feeling inspired by the incredible strength John possessed right up to the end.
I highly recommend this documentary both for its thoughtful delivery of the final months of John's life and for its impact it no doubt has had on bringing awareness on EB.
I highly recommend this documentary both for its thoughtful delivery of the final months of John's life and for its impact it no doubt has had on bringing awareness on EB.
awesome
hillbillywildcat5125 October 2006
i was greatly moved when i watched the movie.how jonny could keep such hope and faith was amazing. so many people only care about what they want , and fuss about all the things they don't have . and they are such small things ,like chothes,money a new car . i've seen people in tears because of a blemish. this movie brings everything back to the basics . love,hope the beauty of the simple but so important things in life.it makes our everyday problems seen for what they are Small and really unimportant. you watch this boy and you realize as long as you have been blessed with food ,a roof over your head and your loved ones around you .you are truly blessed.and the saying stop and smell the roses truly has a new meaning.and i know jonny will see this and i want to thank him so much for sharing such faith,strenght,and humor with me .thank you jonny i know you soar the heavens and bring much love and laughter to the heavens above.
The best and most moving documentary about an extraordinary person.
yogi_jm6 January 2008
Warning: Spoilers
The most moving and truly eye opening documentary ever created. I cried the whole way through, from start to end. Watching the show you are immediately captured by a man's struggle to live without pain, to live a life we would take for granted. The first time I heard the title, I was almost scared to see the program, it was hard for me to comprehend living in agony every day of every year of my life. I truly felt for him. The saddest part of the documentary is when Jonny picks out his coffin. Could you imagine doing that? Even more so, even though he was in excruciating and unbearable pain he still opened up his own charity. (DEBRA)Jonny is one of the only people that deserves true respect and admiration, he is the definition of a role model, what a true and undeniable hero he was!
A film that will stay with you long after watching it
frey-429897 February 2024
This is one of the best documentaries ever made. One that everyone should watch before they shuffle off this mortal coil. Utterly heartbreaking, eye opening and thought provoking. It will stay in your mind somewhere for a long time after watching it. What a fine human being Jonny was. Utterly wise, witty and full of important values and lessons to teach those of us who are still here. It was made in an excellent way, and is flawless in its delivery from the start to the end. You will likely feel very affected by this film, I know I was the first time I watched it when it first aired almost 20 years ago. I can almost guarantee you will get goosebumps, tears, and as mentioned before. It will probably be one of the most moving and thought provoking documentaries you will ever watch in your life.
Comments on the film
josh83b14 September 2005
Warning: Spoilers
Just saw it and it was truly inspiring. Jonny Kennedy would be such a great role model for people who think they have it bad...if only they knew of him. Sometimes I get a little sad and feel sorry for myself when things aren't going my way but, looking at what some people have to go through on a daily basis, I really have no excuse...and I am grateful for seeing this movie.
Also, I am an atheist and have not really ever held a positive view of people who choose to recognize a God (or gods). I could never fathom why people could believe in this "make-believe". However, watching this film and seeing that Jonny Kennedy was religious, and that this helped him cope with the idea of an after-life, I now can appreciate peoples' right to believe in what they want. Who am I to question one's faith?
Also, I am an atheist and have not really ever held a positive view of people who choose to recognize a God (or gods). I could never fathom why people could believe in this "make-believe". However, watching this film and seeing that Jonny Kennedy was religious, and that this helped him cope with the idea of an after-life, I now can appreciate peoples' right to believe in what they want. Who am I to question one's faith?
The Boy Whose Skin Fell Off
jboothmillard14 October 2005
Warning: Spoilers
This was a must see documentary for me when I missed the opportunity in 2004, so I was definitely going to watch the repeat. I really sympathised with the main character of the film, because, this is true, I have a milder condition of the skin problem he had, Dystrophic Epidermolysis Bullosa (EB). This is a sad, sometimes amusing and very emotional documentary about a boy with a terrible skin disorder. Jonny Kennedy speaks like a kid (because of wasting vocal muscle) and never went through puberty, but he is 36 years old. Most sympathising moments are seeing his terrible condition, and pealing off his bandages. Jonny had quite a naughty sense of humour, he even narrated from beyond the grave when showing his body in a coffin. He tells his story with the help of his mother, Edna Kennedy, his older brother and celebrity model, and Jonny's supporter, Nell McAndrew. It will make you laugh, it will make you cry, it is a must see docuemntary. It won the BAFTAs for Best Editing and Best New Director (Factual), and it was nominated for Best Sound (Factual) and the Flaherty Documentary Award. It was number 10 on The 100 Greatest TV Treats 2004, and it was number 6 on The 50 Greatest Documentaries. Very good!
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