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Don’t Stop Me Now

A film as unique as the man it celebrates. Born with EB, a debilitating genetic skin disorder that leaves the skin as delicate as butterfly wings, Johnny defied all expectations. Helped by the defiant spirit of his Mother, Johnny learned to walk, found love and lived life on his terms. His friends ranged from Lords to Pin up girls and all learned there was much more to Johnny then his disease. When Johnny finds out he has terminal cancer he decides to make a documentary. One problem, will he live long enough to finish it…


To produce a commercially viable feature narrative film based on the award-winning documentary and heart-wrenching inspirational story of Johnny Kennedy.

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The greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances.” ― Martha Washington


There is no greater proof of this truth then Johnny Kennedy. Born with a severe genetic skin condition called Dystrophic Epidermolysis Bullosa, Johnny’s life was one of constant pain. I stumbled on to this project quite by accident. Late one night I couldn’t sleep so I started to watch some television when a documentary caught my eye. It was, “The Boy Whose Skin Fell Off”, not the most appealing of titles, but I was fascinated by this man born with a genetic condition I had never even heard of. It would have been easy to change the channel, but something about Johnny drew me in, his wit, wisdom and joie de vivre.


Johnny defied all expectations, he lived when he should have died and laughed when he should have cried. He touched the lives of everyone around him through his sharp, outrageous humor and blunt truth telling wisdom. He embraced life through exploits like skydiving, racing and, most adventurous of all, falling in love. Johnny transcended his condition and had a way of reminding those around him of our shared humanity. He was so much more than the condition that afflicted him. Johnny had a deep desire to make his life meaningful, raise awareness about his condition and to leave the world a better place. I think those are worthy goals we all strive for within our own lives. The fact that Johnny inherited a difficult set of circumstances didn’t diminish his desire to leave a mark and to do so with humor, pluck and courage.


His story has resonated throughout the United Kingdom and I think it can do the same throughout the world. Johnny’s is a story of hope within the worst of circumstances, optimism in spite of the obstacles and the dignity of life even within the cruelest of conditions. He also highlights the value of life and how we can exceed the expectations of so-called experts and doctors. Whether his story reminds us of our blessings or encourages us to make the most of our lives, it is a story worth telling and seeing. A drama full of action about overcoming adversity in the vein of award winning classics such as The King’s Speech and My Left Foot.


The UK Film Fund is excited about this project and looking forward to helping it making the jump to the big screen. We’ve produced a first rate screenplay and have a budget to make this a reality. I also believe we have all the elements necessary to attract top level talent. My hope is that you will join us on this journey and help tell Johnny’s story to the world.


Robert Stillman Producer


My name is Edna Kennedy and on the 4th November 1966 I went to the hospital where I had a Cesarean Section in order to save the life of my son Jonathan, who was to become known as Jonny his choice, he was showing signs of distress in the womb and needed to be born as quickly as possible, little did I know what was ahead of me both emotionally and physically.


Jonny was two days old before they would let me go down to the isolation ward to see him and even then they kept asking if I was ready to see him. That was a strange question as I didn’t really know what to expect even though I had been told that he had no skin on his right leg from the knee down. I would point out that the last thing in the world I could ever have been was a nurse, I always admired them and could never understand how they were brave enough to do this job. When I did see my lovely new born something happened to me as all my emotions seemed to become locked away and all I saw was a small scrap of humanity who needed me to look after him and keep him safe. Yes there was no skin from the right knee down and it didn’t stop there, he had blisters on various parts of his body and a blood blister the length of his tongue from sucking on the bottle even though the nurses had enlarged the hole in the teat.


Once I got him home it was then the hard work started having to learn, through trial and error, how to change bandages and how to burst the blisters; which seemed to crop up for no apparent reason. Feeding him was also a big problem as his swallowing could be very poor sometimes. There were days when he couldn’t even swallow his own saliva as the blisters had developed in his throat.


Today thanks to the help of the charity DEBRA and the medical advances these children can be fed through a tube directly into the stomach therefore avoiding trauma to the throat and mouth. The charity has been a great support not only to parents but for funding research of this horrendous and very painful condition I only wish it had been there when Jonny was a baby.


Little did I know that my son would be the focus of an incredible documentary but that his voice would be heard all over the world helping to bring attention to this rare and debilitating condition. I know through the e-mails that I have received his voice has been heard and he has helped a lot of people in many different ways even though he is not here physically. I only hope the film that is in the process of being made reaches as many as possible and they get to see that Jonny was not just a boy with very fragile skin but that he had a very wicked sense of humour and liked nothing better than to make people laugh. He also spent as much time as he possibly could not only raising awareness but also raising money in order to help those sufferers who were coming along behind him as he worried more about their pain than he did about his own.


My main dream is to see the end of this medical nightmare so that no other family will have to go through the emotional roller coaster that we as a family did.


Sincerely, Edna Kennedy