The Boy Whose Skin Fell Off

This script provides support for people coping with terminal illness, funeral planning and bereavement plus information on Jonny's charity.

Jonny Kennedy suffered from the rare genetic skin disorder Dystrophic Epidermolysis Bullosa or EB. Jonny was a trustee and active member of the charity DebRA. There's no government funding into the search for a cure for EB so DebRA relies on donations to provide practical support and fund research. You can find out more about the condition EB or make a donation towards DebRa's work by calling 01344 771961 or by visiting their website www.debra.org.uk.

The Birth Defects Foundation (BDF) offers comfort, support and information to anyone concerned about or affected by birth conditions. Their confidential "Here to Help" service is managed by a team of BDF nurses who have extensive experience of a wide range of genetic conditions and birth defects. Contact them on 08700 70 70 20 (Mondays to Fridays 9.30am-5pm) or check out their website at www.bdfnewlife.co.uk.

The organisation Skinship UK runs a helpline for people with any kind of skin problem including all types of skin cancer. Call 01387 760 567 (Mondays to Fridays 9am-5pm). You can find out more about Skinship on their website www.ukselfhelp.info/skinship.

If you coping with terminal illness yourself or perhaps caring for someone who is terminally ill, Hospice Information offers details on hospice and palliative care. They help patients, families and carers to identify services and resources. Call their national rate number on 0870 903 3903 (Mondays to Fridays 9am-5pm). Or go to their website at www.hospiceinformation.info.

There's support and advice on all aspects of caring for someone, on the free CarersLine 0808 808 7777 (any time). Ring this number to request an information pack, but if you'd like to speak to an adviser call on a Wednesday or Thursday (10am-12 noon, 2pm-4pm). You can also check out their website at www.carersonline.org.uk.

Whether you're grieving for someone yourself, are concerned about someone else dealing with a bereavement, there are a number of organisations which provide emotional help and practical information. It's sometimes easier to talk to someone who isn't close to you or emotionally involved.

Cruse Bereavement Care supports all bereaved people. They offer advice, support, help and information, no matter how recently or long ago you were bereaved. To find out about all the Cruse services, call their helpline on 0870 167 1677 (Mondays to Fridays 9.30am-5pm). You can visit their website at www.crusebereavementcare.org.uk.

Cruse also runs services aimed specifically at supporting young people aged 12 to 18 on a free phone helpline 0808 808 1677 and at the website www.rd4u.org.uk.

The Child Death helpline offers support to anyone affected by the death of a child, whatever age. The line is staffed by bereaved parents and you can call freephone 0800 282 986 (Mondays to Fridays 10am-1pm, or any day 7pm-10pm). You can also visit their website at www.childdeathhelpline.org.uk.

It's not unusual for people to do as Jonny did and plan their own funeral. A funeral can take place anywhere and there are no restrictions on the content of the service. Indeed it's not necessary to have any kind of ceremony, but if you do, you may request content that reflects the person and the sort of life they led. Favourite music, both classical and contemporary, is increasingly common and photographs or mementoes are sometimes incorporated.

However there's no getting away from the fact that dealing with a death is difficult for all concerned, but there are organisations that can help with all the practical matters. Looking at a couple of useful websites can help you focus on what you need to arrange and how to personalise the funeral.

If I Should Die is a website dedicated to providing as much practical information and support as possible. It is aimed at everyone, whether they are considering their own death or coping with the death of a loved one, go to www.ifishoulddie.co.uk.

The Natural Death Centre is a charitable project that aims to support those dying at home and their carers and to help people to arrange inexpensive, 'Do-It-Yourself' and environmentally-friendly funerals. It has a more general aim of helping to improve the quality of dying. Check out their website at www.naturaldeath.org.uk to find out about their publications and services.

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