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.

Aims

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

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.

Curriculum Relevance

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:
1. Promoting Equal Opportunities in a Care Context
2. 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.

Background

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.

Activities

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.

Links

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