The Boy Whose Skin Fell Off Part Four

Jonny Kennedy died in 2003 aged 36. 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 2004, that was an uplifting, confounding and provocatively humorous story of a singular man.

The Boy Whose Skin Fell Off Part Five

Jonny Kennedy died in 2003 aged 36. 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 2004, that was an uplifting, confounding and provocatively humorous story of a singular man.

Birthing Plan

After our daughter Regan was diagnosed with Full Trisomy 18 at twenty weeks our lives completely changed forever. The emotions you experience are unexplainable – even to your partner who is going through the same thing. I had been pretty lucky throughout my whole life to manage every challenge I was given. Well, that hot day in July proved to be the end of the control that I thought I had over my life. Here we were receiving the most precious gift two people could ever hope for, and she was going to be taken back. This was inconceivable for a control freak like me. I once told my husband that getting a diagnosis of Trisomy 18 was similar to being told your child has an incurable Stage IV cancer. You don’t know how long you will have this child, and you have to choose how you are going to embrace the time that you do have. There is no right or wrong decision when it comes to deciding what is best for your child because it was all done out of love. Every choice you make following this diagnosis is what is right for your family and your child.

After [...] continue the story

Between Life And Death Part 1

Provocative documentary following the doctors who can now interrupt, and even reverse, the process of death. Filmed over six months in the country’s leading brain injury unit (Addenbooke’s Hospital, Cambridge), it follows the journey of a man who, by only moving his eyes, is eventually asked if he wants to live or die. Two other families are also plunged into the most ethically difficult decision in modern medicine.

Between Life And Death Part 2

Provocative documentary following the doctors who can now interrupt, and even reverse, the process of death. Filmed over six months in the country’s leading brain injury unit (Addenbooke’s Hospital, Cambridge), it follows the journey of a man who, by only moving his eyes, is eventually asked if he wants to live or die. Two other families are also plunged into the most ethically difficult decision in modern medicine.