Documentary's:
The boy whose skin fell off
The documentary follows the last 4 months of a Jonny Kennedy who has suffered from EB since birth. John Kennedy is a 36 year old man however due to his skin condition he has barely grown (he is 5ft) and the condition has also cause his voice box to scar which has left him with a high pitch voice. The condition Epidermolysis bullosa (link for more information) causes the skin to be very easily ripped and torn by the slightest amount of friction or contact. This then causes the skin to blister easily and scar.
For further information about the program or the Charity links below
Charity (DEBRA): https://www.debra.org.uk/
The documentary is narrated by Jonny as he explains how after he was told that he only had 1 year to live he decided to go out and do things that most people would think to be impossible for him for example he went flying, skydiving, he went to number 10 downing street and then set up his own charity for his skin condition.
during one point in the documentary he even went a chose his own coffin to which for some people might be a bit odd but Jonny had come to terms with his fate and decided that he was going to arrange his own funeral. During this point in his life he also decided to leave home and go live on his own but due to his skin condition he did have to have 24/7 care from carers and family.
Another point in the documentary the crew ask his mother with him next to her weather after all of this would she have had an abortion at the time of his birth knowing what kind of life he was going to live and her answer was "yes" and even Jonny agreed with her as the skin condition had caused much trouble through his life and has had effects on the family. But around the tome of his birth abortions were looked down upon by most people and most hospitals did not offer any kind of contraception.
Overall this documentary does make you question some of the ways they filmed his last few months to with some might be a find disturbing and moving but overall this documentary does follow the death of man with a life changing skin condition.
during one point in the documentary he even went a chose his own coffin to which for some people might be a bit odd but Jonny had come to terms with his fate and decided that he was going to arrange his own funeral. During this point in his life he also decided to leave home and go live on his own but due to his skin condition he did have to have 24/7 care from carers and family.
Another point in the documentary the crew ask his mother with him next to her weather after all of this would she have had an abortion at the time of his birth knowing what kind of life he was going to live and her answer was "yes" and even Jonny agreed with her as the skin condition had caused much trouble through his life and has had effects on the family. But around the tome of his birth abortions were looked down upon by most people and most hospitals did not offer any kind of contraception.
Overall this documentary does make you question some of the ways they filmed his last few months to with some might be a find disturbing and moving but overall this documentary does follow the death of man with a life changing skin condition.