Watch The Boy Whose Skin Fell Off

The Boy Whose Skin Fell Off is a poignant and moving documentary from Channel 4, which tells the tragic story of Jonny Kennedy. Jonny was born with a rare condition called Epidermolysis Bullosa (EB), which means that his skin was as fragile as a butterfly's wings. This heart-wrenching film is a tribute to Jonny's courage and determination, which continued even in the face of immense pain and adversity.

The documentary starts by showing Jonny struggling with his condition during the final months of his life. He was in tremendous pain all the time, and his skin would literally fall off if he so much as bumped into something. Despite all this, though, Jonny remained remarkably upbeat and optimistic, and never lost his sense of humour. He knew that he didn't have long to live, and wanted to use whatever time he had left to raise awareness about EB and help others who were suffering from the same condition.

As we learn more about Jonny's life, we see how much he was loved by his family and friends. His mother, father, and sister all speak about the challenges they faced while looking after him and trying to keep him comfortable. They talk about how difficult it was to see him in such pain, and how much they admired his courage and strength. It's clear that Jonny was an inspiration to everyone who knew him.

The documentary also features interviews with medical experts who explain more about EB and the research that is being done to find a cure. We learn that EB is caused by a faulty gene, which affects the production of a protein that helps hold the skin together. As a result, people with EB have skin that is as fragile as tissue paper, and is prone to blistering and tearing. There is currently no cure for the condition, and treatment is mainly focused on managing the symptoms and preventing infections.

Throughout the film, we see Jonny's determination to make a difference in the world. Despite his condition, he traveled around the UK to meet other people with EB and give talks about his experiences. He also took part in medical trials in the hope that he could help find a cure for the condition. Despite his pain and discomfort, Jonny was always smiling and optimistic, and it's clear that he touched the lives of everyone he met.

One of the most moving parts of the documentary is when Jonny decides to make a video message to be played at his own funeral. In the video, he speaks candidly about his life and his hopes for the future. He talks about how much he loves his family and friends, and how grateful he is to have had them in his life. He also urges people to support research into EB, so that future generations won't have to suffer as he did.

The final part of the documentary shows Jonny's funeral, where his friends and family gather to say goodbye to him. It's an emotional and heart-breaking scene, but it's also a celebration of Jonny's life and his legacy. As the film ends, we are left with a sense of admiration and respect for Jonny, and a feeling that his story will stay with us long after the credits have rolled.

The Boy Whose Skin Fell Off is a powerful and unforgettable documentary that shines a light on a condition that few people know about. Through Jonny's story, we are reminded of the power of the human spirit, and the importance of living life to the fullest, no matter what challenges we face. It's a tribute to Jonny's courage and determination, and a reminder to all of us to be grateful for the time we have on this earth, and to make the most of every moment.