The Boy Whose
Skin Fell Off
The recommended age range for using this DVD in an educational setting is 14–19
years. However it should be noted that the subject matter is potentially distressing
to viewers of any age. There are images of death and a disturbing medical condition.
There are also a few instances of swearing. It is therefore recommended that teachers
preview the material before presenting it to their students.
Students should:
- increase their awareness of and information about Epidermolysis Bullosa
- appreciate the story of one person's courage in coping with pain
and disability
- learn about how disability affects relationships between friends and families
- appreciate the importance of religious beliefs and values in coming to
terms with illness and death
- consider the ethical issues surrounding abortion
- consider attitudes to death and dying
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Beginning of the end
The programme introduces Jonny Kennedy, aged 36, who is suffering from the genetic
skin blistering condition Epidermolysis Bullosa (EB) from which he knows he will
eventually die. Jonny chooses his coffin at the undertakers.
Life's certainties
Jonny explains his philosophy that death is part of life. Viewers learn about EB,
Jonny's early life and his efforts on behalf of the charity DebRA.
Broken body, unbroken spirit
A potential cure has been found for EB but this is too late for Jonny. He talks
about how the condition has affected his life. Drugs have affected his voice and
prevented him from going through puberty.
Eulogy
Jonny has been diagnosed with cancer and has been given a year to live. He discusses
his funeral arrangements with his friend, Lord Rupert Redesdale. In spite of the
short time left, he wants to set up his own home in his favourite town of Alnwick.
Life is a lesson
Jonny believes that 'Earth is a classroom'. His Spiritualist religion has
helped him come to terms with much of the pain and frustration caused by EB.
Ethical issues
Jonny's body is covered in sores. Looking after him is disabling for his
family, as well as himself. Jonny's mother says that she would have aborted
her baby if she had known about his condition before his birth.
Finding peace
To help him cope with his pain, Jonny's mind often wanders to imaginary
places. He has also undertaken several challenges, such as flying in a glider. Jonny
talks about his father, who was never able to come to terms with his son's
condition. Jonny's brother Simon agrees to speak on behalf of the family
at his funeral.
Saying goodbye
Jonny holds a housewarming party in his new home. Despite the fact that his health
is deteriorating, he talks about his plans to visit 10 Downing Street.
Last requests
Jonny is tireless in his fundraising efforts for DebRA and the visit to No.10 goes
ahead. Meanwhile he continues his funeral arrangements.
Away with the angels
Jonny has died and lies in his coffin. At his funeral friends and family speak of
his positive outlook on life, which has been an inspiration to so many people. We
learn that Jonny's visit to No.10 proved to be worthwhile as Cherie Blair,
the prime minister's wife, has agreed to attend future DebRA fund raising
events.
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England
National Curriculum for Personal, Social and Health Education
Key Stage 4
Respecting the differences between people: relationships, family life, bereavement
OfSTED Guidelines for Spiritual, Moral, Social and Cultural Education
Spiritual: values and beliefs, understanding human emotions
Moral: ethical issues and personal values
Social: family structures, the notion of interdependence
Wales
Personal and Social Education Framework
Key Stage 4
Social Aspect: the effect of bereavement
Emotional Aspect: the causes and effects of stress, recognising and managing frustration
Spiritual Aspect: questions involving meaning and purpose in life, how beliefs affect
behaviour and lifestyle
Moral Aspect: the factors involved in making moral judgements
Scotland
The programme will support a number of initiatives around citizenship, Health Education,
The Health Promoting School and Personal and Social Education. Teachers should check
current guidelines. In particular the programme will support:
National Qualifications: Personal and Social Education all levels
Students should develop qualities of:
- Self esteem
- Respect and care for others
- Positive attitudes
- Commitment to learning for life
- A sense of belonging to society
- Confidence in coping with life in a changing world
The programme will support the units:
- Personal Awareness and Development
- Social Awareness and Development
The programme may also offer some support for:
- National Qualifications: Care all levels, in particular the units:
- Promoting Equal Opportunities in a Care Context
- Interpersonal Skills for Care
May also be relevant for National Qualifications in Religious, Moral and Philosophical
Studies and in Biology (all levels)
Northern Ireland
Personal, Social and Health Education
Key Stage 4
Objective 2: Health in the context of social development
Relationships – family, peers, others
Religious Education
Key Stage 4
Core syllabus: Morality – respect for love, respect for life
Citizenship: Learning for Life and Work
Key Stages 3 & 4
Key concepts:
– Human rights and social responsibility
– Diversity and inclusion
– Equality and social justice
Science
Key Stage 4
Some aspects of living organisms and life processes
Other subjects:
RE
The content of the programme links with RE syllabuses requiring a study of the church
as a community and the consideration of ethics and values. See Locally Agreed RE
Syllabuses for further information.
Human Biology
The programme may support GCSE, AS and A Level Human Biology syllabuses, which include
the study of genetics as a course requirement. See individual examination board
syllabuses for further information.
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The film
In the last months of his life, Jonny Kennedy decided to work with filmmaker Patrick
Collerton to document his life and death. Not shying away from the grim reality
of EB, the film is also a celebration of a life lived to the full. It was first
broadcast on Channel 4 in March 2004. Six months later, Channel 4 re-screened the
film and visited Jonny's family to see how they had come to terms with his
death. This DVD version has been divided into chapters to make it more flexible
for use in an educational setting. The chapters divide the content into manageable
short sections of around four minutes in length. These can be viewed as separate
items, enabling viewers to focus separately on the various issues raised by the
film.
Epidermolysis Bullosa
Epidermolysis Bullosa (EB) is a disabling genetic skin condition, where the skin
blisters and breaks at the slightest touch. The term was first used in 1886 for
a form of hereditary blistering disease and is commonly used to describe a family
of genetic disorders that cause blistering and shearing of the skin from even the
mildest of friction. There is no treatment apart from daily wound care and bandaging.
An estimated 2 out of every 100,000 live births are affected with some type of EB.
The disorder occurs in every racial and ethnic group throughout the world and affects
both sexes equally.
There are around 5000 people in the UK with EB. It is incurable although recent
breakthroughs in gene research provide hope for a potential cure in the future.
Jonny had Dystrophic EB in which blistering is widespread and constant and leaves
scarring. This scarring results in permanent change to the skin For example, fingers
may fuse and hands contract, reducing movement. Tragically, with this type of EB
the onset of fatal skin cancer is a likely consequence, as was the case with Jonny.
DebRA
DebRA was formed in 1978 by a group of parents whose children were affected by
EB. The charity has now grown significantly, with groups having been formed in 32
countries around the world. DebRA's activities include the establishment
of treatment centres, providing health care, funding research and fundraising activities.
Jonny was a Trustee of DebRA and throughout his life raised thousands of pounds
and increased awareness of the condition and the charity.
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For or against abortion
It is now possible to test for EB in pregnancy. Students could hold a class debate
presenting the arguments for and against aborting a child that will have EB. Two
or more small groups should be allocated a point of view. They should:
Brainstorm and identify the main arguments
Research the facts
Present their ideas to an audience.
After hearing the presentations, the audience should be given the opportunity to
ask questions. A vote can then be taken to determine the majority view.
Campaign trail
Jonny did much to raise awareness about EB. In groups, students could plan a publicity
campaign for EB, or another medical condition. Their campaign might include:
Lobbying MPs
Involving celebrities
Designing a website
Fund-raising activities.
Goodbye letters
Students could participate in a class discussion about attitudes to death and the
ways in which people cope with losing a close relative or friend. Extracts of the
video could be viewed again in order to examine Jonny's positive philosophy
of life and death and the vocabulary he uses to describe it. Students could then
write a letter of condolence to the close friend of
someone who has died.
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This web page contains links to other websites that are neither controlled nor maintained by Channel 4 Television.
Channel 4 Television is not responsible for the content of these sites and does not necessarily endorse the material
on them.
www.debra.org.uk
For more information about DebRA UK – the national charity working on behalf
of people with Dystrophic Epidermolysis Bullosa – visit the website or
telephone 01344 771961.
www.childbereavement.org.uk
This helpful website has special pages for young people on issues such as understanding
your feelings, coping with funerals and going back to school or college.
www.snu.org.uk
The website of the Spiritualists' National Union giving information about
Spiritualist beliefs and churches that can be visited.
www.smsc.org.uk
Information and resources for teachers about Spiritual, Moral, Social and Cultural
Education
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