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| "The BDFA has given me hope,
encouragement and support and helped me recognise the good things
and that happy times can still be accomplished by my daughter and
the rest of the family" Sharon Burnham |
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BDFA LIBRARY RESOURCES OCTOBER 2007
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If you would like to borrow any of our books or DVDs (or know of any you have found useful which should be aware of and we could try to purchase or you feel you could donate and make available to other families and professionals) please contact: Jan Sablitzky, BDFA Development Officer 0115 965 4815 or email bdfa.info@btinternet.com. We have indicated which publications are available as free pdf downloads. FAMILY STORIES Thor’s Film, a good life [1 set] A film about Spielmeyer-Vogts Disease Part 1 – Thor was struck down at the age of five with Batten Disease syndrome. In this film we get to follow Thor from birth until he turns 18. Run time: 20 mins Part 2 – In this film we follow Thor through his adult life, from his coming of age at 18 to his death at 25 as a mature, aware young man. Run time: 28 mins. Produced by the Swedish Institute for Special Needs, Education Sales dept. Nygatan 18-20, SE 90327, Umea, Sweden tel; 46771324325, order@sit.se internet:www.sit.se Daring To Live Life [5] This is the story about a young man’s last two years and how life despite his incurable and rare disease – Batten disease – can become meaningful after all. The author, Aina Dalentoft, is Thor’s mother and work a special needs pedagogue in Sweden. She depicts her own and Thor’s experiences primarily as a mother but also as a pedagogue deeply interested methodology. The book, with its practical methodological examples and its both psychological and existential perspective, is an important documentary for people in various health care and pedagogical professions. As a unique life document the book also has a general important value. Published by Strandkullens FÖrlag 2007 ISBN 91-975660-7-1 The Unconquerable Spirit [1] A mother’s love forces a dynamic struggle for justice This is a true story about a normal, happy-go-lucky, child, Michele, who was suddenly faced with extraordinary challenges that would change her young life forever when at the age of eight, without any warning, this youngster suddenly became blind… Order from from the author Kathleen Morton at www.kathleenmorton.com The Daniels Family Story [1] Rhys the Fight for life When brave toddler Rhys Daniels was diagnosed as having the life-threatening Batten’s disease, his parents Barry and Carmen decided to fight for their son’s survival by getting a bone marrow transplant. So too did Rhys… Published by Virgin Books 1995 ISBN 0-86369-983-9 PRACTICAL SUPPORT Growing up to Dependence [5] Children and Young People with Batten-Spielmeyer-Vogt Disease This publication deals, on the one hand, with the development process and, on the other hand, with the upbringing, care and guidance to the end of lives with children and young people suffereing from Batten-Spielmeyer-Vogt disease (BSV), the juvenile form of neuronal ceroid-lipofuscinoses. Published by Bartimeushage 1992 – Doorn Centre for multiply handicapped Part of the Bartiméus Foundation PO Box 87 3940 AB Doorn Netherlands ISBN 90-71534-21-9 Teach and be taught [2] A guide to teaching students with Batten Disease A practical information book for parents and teachers that addresses the issues of having a child with Batten Disease in school. Includes sections on Individualized Education Program (IEP), alternative communication, vision, social interactions, therapy, law, etc. Written by Wendy Bills, M.Ed., et. al. and printed by the BDSRA, America (3rd ed revised 2005). Pdf download available at http://www.bdsra.org/bookstore.htm Batten Disease Insights for Parents [1] This is for parents of children with Batten Disease and deals with the questions and issues that parents want to know. Contains lots of useful answers to commonly asked questions often at the point of diagnosis. Useful alongside the booklet - Batten Disease: Neuronal Ceroid Lipofuscinosis - An Easy to Understand Guide. Written by Lance Johnston, Executive Director BDSRA USA and Joan Curran, Psychologist, 30pp Published by the BDSRA USA Batten Disease – Neuronal Ceroid Lipofuscinosis [2] An Easy to Understand Guide This book is written in layman's language and covers Batten Disease, what it is, how it is diagnosed, how it is inherited, how it affects an individual, and about BDSRA. LW Johnston, et. al. 50pp 2000 Published by the BDSRA (America) Pdf download available at http://www.bdsra.org/bookstore.htm Instructions for Careproviders [1 – 1 CD] A practical workbook (careplan) designed to be completed in regard to the care of a specific individual with Batten Disease. Could be carried by the individual and given to new carers or Hospital staff in an emergency situation. Filled out and updated on a regular basis by a carer on the disk and then printed out each time changes are made, this would be a very useful tool for families to use to save them time when meeting new carers at home/school/respite facility. Can be adapted as wished. Written by Elise E. Labbé. Ph.D, 1998 (BDSRA) Death and Dying [1] A helpful guide in dealing with the many 'end of life' issues. An honest and sensitively written guide to questions you may be asking yourself or your children may be asking you. Written with great consideration by Nancy Carney the American Batten Disease Support and Research Association Nurse in 2007 it seems to be very relevant to UK family issues too. Written by Nancy Carney RN - BDSRA Medical Liaison/Educator, Published BDSRA USA 2007 Respiratory System [1 – 1 CD] A very detailed information resource on the Respiratory System for nurses, carers and parents caring for children/young adults with Batten Disease once respiratory issues present themselves. Covers issues from phlegm and physic techniques to intermittent mechanical ventilation and resuscitation techniques. 76pp Written by Nancy Carney RN, BDSRA Medical Liaison/Educator Published BDSRA 2002 Pdf download available at http://www.bdsra.org/bookstore.htm Physical Therapy [1– 1 CD] Motor Development and Related Topics A very detailed guide to what physiotherapy is and why it is important in the care of individuals with Batten Disease. It talks about maintainence of mobility and independence and also prevention and management of painful conditions. Good guide to discuss with your professional but please note that some medications mentioned have different names or are not available in the UK. Mentions behavioural issues and physical care issues. Good glossary of terms and great visual directions. 165pp Written by Nancy Carney RN - BDSRA Medical Liaison/Educator Published BDSRA 2004 Pdf download available at http://www.bdsra.org/bookstore.htm Dental Issues [1] A guide to mouth care and potential problems relating to Batten Disease. Notes the effects of medications and swallowing difficulties in detail. Good for discussion with your Community Nurse and Dentist. Please note some medications may not be available for use in the UK. 61pp Written by Nancy Carney RN - BDSRA Medical Liaison/Educator Published BDSRA 2004 Pdf download available at http://www.bdsra.org/bookstore.htm Pressure Sores [1] Descriptions of what a pressure sore is and how to prevent them. Recommended treatments not used in the Uk as we have different products and names for medications and dressings. Suggestions for prevention of pressure sores is very good but document would need rewriting for UK relevence. Please discuss all treatment/Dressings and mattress issues with your Paediatric Community and or District Nurse. Written by Nancy Carney RN - BDSRA Medical Liaison/Educator28pp Published BDSRA 2002 Pdf download available at http://www.bdsra.org/bookstore.htm Gastrointestinal System [1CD] An extremely detailed account of the normal GI system, things to look out for and investigations when things go wrong. Also surgical interventions possible in later stages of Batten Disease to alleviate feeding problems and reflux discomfort. Written by Nancy Carney RN - BDSRA Medical Liaison/Educator Published BDSRA 2002 Pdf download available at http://www.bdsra.org/bookstore.htm Medications [1] A compilation of medication most commonly used by children with Batten Disease. Includes anticonvulsants, antispasmodics, anitidepressants, sedation, drugs for other problems. Information provided for information purposes only. If medical or other expert assistance is required, the services of a competent professional in the UK should be obtained. 139pp Written by Nancy Carney RN - BDSRA Medical Liaison/Educator Published BDSRA 2002 Will You Walk With Us? [1] Batten Disease and Hospice Care A book that is designed for Hospice workers to quickly give them an understanding of Batten Disease and what is happening including end stages, its affect on the family and that the parents are professionals. 20 pages written by LW Johnston, Executive Director BDSRA. Published 2002 Pdf download available at http://www.bdsra.org/bookstore.htm SPECIALIST INFORMATION NCL 2007 [1] Proceedings of the11th International Congress on Neuronal Ceroid Lipofuscinosis (Batten Disease) Rochester, NY, July 14-17th, 2007 Pdf download available at http://www.urmc.edu/ncl2007/ Programme and Proceedings of the First International Education Conference on Batten Disease [1 pdf] Örebro, Sweden May 3-6 2006 Neuronal Ceroid Lipofuscinoses (Batten Disease) [1] This is a monograph reviewing current knowledge. A new edition of Dr Mole’s book, whose work is partly-funded by the BDFA, is due out in 2008. Edited by HH Goebel, S E Mole and B D Lake, IOS Press (1999) ISBN 90-51994818 The Genes we share with yeast, flies, worms and mice [2] new clues to human health and disease A report from the Howard Hughes Medical Institute USA 2001 100pp Brain and Retina in degenerative diseases of childhood [1] myoclonic epilepsies, neuronal ceroid lipfuscinoses, progressive retinopathies Proceedings of the International Symposium on 'Focus on neuropaediatrics' Fulda 2006. Specialized material for clinicians and scientists. eds B Schmitt, A Kohlchutter, B A Neubauer, B Plecko-Startinig SPS Publications, Helibronn Germany 1st Edition 2007 isbn : 3-936145-43-1 Inherited Metabolic Diseases [1] A guide to 100 conditions This guide provides specialist information on metabolic diseases for the non-specialist. In a concise, accessible and family-friendly format, each entry lists the names by which a condition is known, and explains the genetic causes of the disease, the physical effects, the patient's symptoms, and available treatments. [Infantile Batten’s p 57]. Edited by Steve Hannigan, Executive Director of CLIMB Published by Radcliffe Publishing, Oxford 2007 167pp ISBN 978-1-84619-099-5 Other useful publications are available from ACT: Association for Children with Life-threatening or Terminal Conditions and their Families www.act.org.uk Assessment of children with life-limiting conditions and their families A guide to effective care planning [1] This publication addresses the issue that one of the common concerns of parents in this situation have is that care is not well co-ordinated. It provides a framework for assessment of children, young people and families which should lead to effective and co-ordinated planning of care. Researched and written by Stella Elston on behalf of ACT 2003 ISBN 1-898447039 Palliative Care for Young PeopleAged 13-24 years [1] Report on the Joint Working Party on Palliative Care for Adolescents and Young Adults The terms of reference for this report were: To consider evidence on the care of adolescents and young adults requiring palliative care and to publish guidance. This report is not prescriptive about how services should be provided but sets out principles, which all members of the caring team can adapt to local needs. Researched and written by Rosemary Thornes, Edited by Stella Elston, Published jointly ACT 2001 ISBN 1-898447063 CBT: Child Bereavement Trust http://www.childbereavement.org.uk/information_support/cbt_shop Their website contains information for both bereaved families and the professionals who are supporting them. In addition, The Child Bereavement Trust has produced books, videos, CD-Roms, many of which have been developed with input from bereaved families.
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