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The Ellen Payne Odom Genealogy Library Family Tree
The Family Tree - December/January 2003
Hereditary disease and Genealogy


There are many reasons why people start out on the trail of their ancestors. Genealogy is a fascinating subject, which absorbs many of us - whether it is to find that tenuous connection to an aristocratic or wealthy family or kinship with the famous or notorious, we dig deep into the mysteries of our past. I once met at a Society of Genealogist conference in Oxford an eminent Family Historian from New Zealand. Her reason for beginning her research was because her daughter had been born with a cleft palate, a condition which is considered to be hereditary, and she was keen to discover more. Needless to say long after her daughterís palate had been repaired she was still hooked on her family history.

Unfortunately many of the serious genetic conditions which affect children are not so easily cured, in fact medical conditions such as Leukodystrophy, Hurler Disease, Edwards Syndrome, Duchenne Muscular Dystrophy and Cystic Fibrosis are all life limiting. The unfortunate children born with the defective genes which cause these diseases will not reach adulthood.

When a diagnosis is given which offers no hope, or when treatment is abandoned, families often feel isolated, alone and afraid in their grief. That is where a childrenís Hospice comes into play, the staff offer a listening ear, a helping hand and much more. They offer friendship and a sense of community, respite and relaxation, a sharing in the 24-hour care of the very sick child, expert palliative and terminal care and then support for the whole family into bereavement for as long as it is wanted.

The Childrenís Hospice Association Scotland, CHAS, opened Rachel House, Scotlandís first Childrenís Hospice, in Kinross on the shores of Loch Leven in 1996. Rachel House is available to any family with a child/young person who has a qualifying condition and aged between 0-18 at first referral. It is run by a multi-skilled team of paid permanent staff consisting of nurses, physiotherapists, occupational therapists, nursery nurses, play and music therapists, a chaplain and a social worker. It is available all the year round at no cost to the family.

The annual running costs of the hospice are currently £1.7m = ($xxx?), most of which comes from public subscription each year. Much of it from people who are grateful for their own healthy children and grandchildren and some of it from the many Scots and their descendants who have gone forth and settled in all corners of the world.

CHAS is planning a second purpose built hospice at Balloch on the shores of Loch Lomond, where we will be able to care for a further 200 children with life limiting conditions and their families. A £10m capital appeal has been launched to fund this new project.

If you would like more information about the work of CHAS please visit our Website www.chas.org.uk or telephone 44 131 226 4933


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