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MY SKIN IS KILLING ME
In Alabama, USA, Payton Thornton has a rare condition that causes his skin to fall off at the slightest touch. In Chengjiang, China, Sun Cheng has a rare condition that covers his body in thick layers of dark scaly skin. For both, every day is a painful struggle.
This is the moving story of two individuals’ courageous search for a cure. They’ll travel hundreds of miles from home and step into unknown medical territory, hoping for a chance of a better, less tortuous life. But there’s a very real chance that it could come at the ultimate price…
BEHIND THE SCENES
It’s easy to be dismissive of documentaries which focus on some sort of medical anomaly. Critics compare them to 19th century Freak Shows, claiming that they encourage us to gawp at the strange creatures before us. Their fire is often fuelled by the one-line sensationalist titles of the programmes themselves: ‘The Girl with a Foot for a Face’, or ‘The World’s Fattest Man (a man even fatter than the one you saw on that programme last week who was apparently also the World’s Fattest Man, except he wasn’t because this guy’s even fatter)’.
But to condemn a programme because of its title is nonsense. These programmes are normally crammed full of humanity. They are empathetic and heart-warming films that offer a rare and important voice to people that society often does judge according to one-line sensationalist titles. This is exactly the sort of programme that I have always wanted to make.
Payton Thornton is the bravest human being that I’ve ever met. Strangers stare at him. His parents have become immune to people accusing them of having burned their son. It was a complete privilege to be able to make a programme with a one-line sensationalist title that was able to tell the story of Payton’s medical anomaly – a genetic condition called Epidermolysis Bullosa, or EB.
No experience in my career to date has had such a profound experience on me as filming Payton’s bathtime. People have told me that they find this scene hard to watch. The full reality is astonishing. Six hours of agony, every two days. At times Payton begs his mother to stop. He tells her over and over again that he “can’t do it anymore”. “Anymore”… He’s five years old. I had tears streaming down my cheeks as I filmed it. For this extraordinary family, it’s ordinary life.
At the University of Minnesota, a potential cure was being trialled. The snag was that it was an experimental stem cell transplant that could prove fatal. If you need any more evidence of just how dreadful EB is, consider the fact that parents are prepared to run the risk of their child’s death in the quest for relief from a life of continual agony.
We had always planned to film Payton’s story in two blocks as there would be a gap of several weeks between the end of his pre-treatment checks and the transplant itself. During our absence he would begin his chemotherapy and, from that moment on, he would be completely hospital-bound.
As the end of our first stint approached, I felt that I hadn’t yet been able to do full justice to Payton’s personality. His skin made it difficult to get a microphone on him and, as a result, a lot of his cheeky lines had been missed. I explained to his mum that I’d like to find an opportunity for Payton to be himself, just a normal little boy, away from the trials of bandages and baths, away from the horrors of hospitals. But his medical schedule was gruelling and left little time or energy for anything else.
Then, on our final evening in Minneapolis, I got a call to say they were off to the zoo – with a warning that Payton may be too tired to handle it. How wrong can you be?! As soon as we arrived, he shot off in his scooter with a huge smile on his face. We were only there for an hour, but it was an hour of pure Payton. A positive, adorable and hilarious little boy, in spite of it all. Inspiring.
As a parent there can surely be no greater nightmare than giving consent to a procedure that could kill your child. Since we completed our filming a third patient has sadly lost their life post-transplant. But for Payton things are going well – so far.
This is brand new science and nobody knows whether the stem cell transplant offers a long-term solution or if unforeseen complications could arise down the road. The doctors are learning from every case they handle. Nobody is yet daring to use the word “cure”. All they can say is that most of the patients who have survived the process are showing an improvement in their skin.
And Payton is showing more improvement than most.
For clips from the second story in this film, click here.
Producer/ Director/ Edit Producer/ Camera: Nic Guttridge
Production company: Darlow Smithson Productions
Network: Discovery TLC
First broadcast: December 2010 at 8pm