The Boy Whose Skin Fell Off

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.

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.

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.

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.

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.