Purchasing books via this page donates between 5 and 15% of the purchase cost directly to your choice of Lissencephaly Charities. Either the UK based Lissencephaly Contact Group (UKLCG) or The Parker Lee Project (TPLP). You just pay the normal Amazon price.
Just click the link of your choice beside each book’s pictures to take you direct to Amazon to buy a book or find out more.
For TPLP – first please sign into amazon here and search for “Parker Lee Project” and select them as your charity. In the future, make all of your purchases via http://smile.amazon.com to automatically contribute to TPLP.
Click here to find out about Amazon Associates. Currently there are 21 book titles in the shop.
Although these books aren’t all directly about Lissencephaly, they may help you in coping with and understanding the disorder.
Just click on an image to go directly to Amazon if you want to know more about a book or if you want to buy a copy. Remember between 5 and 15% of the cost of the books you buy is donated to the charity you choose.
The UKLCG is a charity providing news and contact to over 150 families in the UK, Europe, Africa and Australia.
TPLP benefits disabled children by sharing unused medical equipment with needy families.
Battle Cries: Justice for Kids with Special Needs by Miriam Edelson
In Battle Cries, author Miriam Edelson lays out a thorough map of the current services and supports available to children with special needs and their families, followed by a discussion of the impediments these families face in the effort to achieve true inclusion in society. Drawing in part on the current Swedish model of care, she offers a strategy for achieving significant improvement to existing Canadian practices and thus a brighter, more hopeful future for our most vulnerable children.
Paperback 250 pages (October 19, 2005) Sumach Press ISBN: 1894549422
Recommended by: Miriam (the author!)
Buy : UKLCG or TPLP
My Journey With Jake : A Memoir of Parenting and Disability by Miriam Edelson
This book is for families/professionals facing challenges! This book is designed to offer hope and practical help to families and professionals facing challenging situations. When a severely disabled child is born, there is no roadmap. “My Journey with Jake” offers practical advice and hope – no situation is insurmountable. We can learn to thrive and help our children live the best lives they are able. –This text refers to the Paperback edition.
Jake is 10 years old and has lissencephaly. This is his story. It’s a riveting and inspirational read.
Paperback – 197 pages 1st edition (April 13, 2000) Between the Lines; ISBN: 1896357350
Recommended by: Miriam (the author!)
Buy UKLCG OR TPLP
Seizures and Epilepsy in Childhood : A Guide for Parents (Johns Hopkins Health Book.) by John M., M. D. Freeman, Eileen P. G. Vining (Contributor), Diana J. Pillas (Contributor)
An excellent book covering all you need to know about seizures. It is very well written in a very easy to read style. It explains about the many different seizure types, an overview of the brain, EEG, CT and MRI. Treatment is covered including some of the well known seizure medications, the ketogenic diet and other seizure treatments.
Paperback – 352 pages 2nd edition (March 1997) Johns Hopkins Univ Pr; ISBN: 0801854989 ; Dimensions (in inches): 0.83 x 8.92 x 5.94
Recommended by: Deanna and Sally
Buy UKLCG OR TPLP
Conversations With Neil’s Brain : The Neural Nature of Thought and Language by William H. Calvin, George A. Ojemann
Ever wondered how the brain works but always thought it would be far too complicated to begin to understand? Conversations with Neil’s Brain is the story of Neil, who suffers from focal seizures and has an operation on his brain to remove the part causing the problem. The book follows the discussions with his neurologist about brain functions, where they are located and how they provide those unique human abilities. Although not directly about Lissencephaly, you are given a clear description of the cerebral cortex (which is always affected in Lissencephaly kids) and the impact the cortex has on human development.. Generally not too heavy a read as it is written in a light, conversational style.
Paperback (May 1995) Perseus Pr; ISBN: 0201483378 ; Dimensions (in inches): 0.95 x 9.19 x 6.13
Recommended by: Jon
Buy UKLCG OR TPLP
Life After Grief by Janet Rosauer
A woman’s story of how faith helped her through the loss of her father-in-law, a close friend, two of her friends’ children, her first son being diagnosed with autism and then having her second child (who had Miller Dieker syndrome) die in her arms. This moving autobiography will tear at your heart strings, give you hope
and reassure you that you’re not alone, no matter how painful the circumstance.
To obtain a signed copy from the author click here.
Paperback – 110 pages (September 1999) Beaver’s Pond Press; ISBN: 189067625X ; Dimensions (in inches): 0.33 x 8.25 x 5.49
Recommended by: Janet and many others
Buy UKLCG OR TPLP
Elements of Medical Genetics/Student Notes by Robert F Muller, Ian D Young
This is a book aimed at students learing Medical Genetics. If you have a basic understanding of biology from your school days and want to understand more about the impact of genes on different human conditions then this is a good read. Like many of the books here it doesn’t specifically discuss Lissencephaly (although MDS does get a mention) it covers chromosomes, genes and a whole load of congenital conditions and their genetic roots. FISH testing and gene mutations are also covered.
Paperback 7th edition (March 1988) Churchill Livingstone; ISBN: 0443027242
Recommended by: Jon
Buy UKLCG OR TPLP
British National Formulary by Bnf
All you need to know about every prescribable drug available in the UK. The standard drug ‘Bible’ as used by all doctors and medical practitioners. What isn’t in this book isn’t worth knowing! Up dated twice yearly, it includes the usages, side effects, and contraindications. Needless to say, it has all the details of anti-seizure medications, reflux drugs, antibiotics and respiratory drugs.
Paperback (April 1999) B M J Books; ISBN: 0727913980
Recommended by: Jon and Sally
Buy UKLCG or TPLP
The Epilepsy Diet Treatment : An Introduction to the Ketogenic Diet by John M., Md Freeman, Millicent T. Kelly, Jennifer B. Freeman, John M. Freemen
This book goes into a lot more depth about the Ketogenic diet and is definitely a must for any one contemplating using the it.
Paperback – 185 pages 2nd edition (January 1996) Demos Vermande; ISBN: 0939957868 ; Dimensions (in inches): 0.44 x 8.35 x 5.39
Recommended by: a looper
Buy UKLCG OR TPLP
Raising a Handicapped Child : A Helpful Guide for Parents of the Physically Disabled by Charlotte M.D. Thompson
About 12% of all school children are disabled from birth defects, accidents, illnesses or other causes. This means 700 children are born each day who need special care, and the number appears to be growing. Raising a Handicapped Child offers a complete, practical, and reassuring guide for parents who care for these children.
Hardcover – 288 pages Rev expand edition (October 1999) Oxford Univ Pr (Trade); ISBN: 019513253X
Recommended by: Linda
Buy UKLCG OR TPLP
When Bad Things Happen to Good People by Harold S. Kushner
Rarely does a book come along that tackles a perennially difficult human issue with such clarity and intelligence. Harold Kushner, a Jewish rabbi facing his own child’s fatal illness, deftly guides us through the inadequacies of the traditional answers to the problem of evil, then provides a uniquely practical and compassionate answer that has appealed to millions of readers across all religious creeds. Remarkable for its intensely relevant real-life examples and its fluid prose, this book cannot go unread by anyone who has ever been troubled by the question, “Why me?”
Mass Market Paperback – 149 pages Reissue edition (September 1994) Avon; ISBN: 0380603926 ; Dimensions (in inches): 0.48 x 6.94 x 4.18
Recommended by: Linda
Buy UKLCG OR TPLP
One Miracle at a Time : Getting Help for a Child With a Disability by Irving R. Dickman, Sol, Dr. Gordon
The emotional and practical experiences of parents of disabled children come together in this inspiring, comprehensive handbook. Up-to-date information and detailed discussions cover coping with the initial diagnosis and long-term emotional impact, finding the right medical treatment and support services, and getting financial and legal support if necessary.
ASIN: 0671789341
Recommended by: Linda
Buy UKLCG OR TPLP
Is My Baby All Right by Virginia and Joan Beck Apgar
Invaluable for all prospective parents – Parents Magazine
Recommended by: Linda
Buy UKLCG OR TPLP
Normal and Handicapped Children : A Growth and Development Primer for Parents and Professionals by Wilbur S. Thain
No review available.
Recommended by: Linda
Buy UKLCG OR TPLP
Physical Management of Multiple Handicaps : A Professional’s Guide by Beverly A. Fraser, Robert N. Hensinger, Judith A. Phelps
New edition of a 1987 guide for health and education professionals and for those who provide occasional service to multiply handicapped individuals. Covers orthopedic, therapeutic, and technological management for enhanced well-being.
Recommended by: Linda
Buy UKLCG OR TPLP
Handling the Young Child With Cerebral Palsy at Home by Nancie R. Finnie, J. Bavin, M. Bax, Marian Browne, Mary Gardner, Nancy Finnie .
Classic text for parents on the handling of children with CP at home. Emphasis on a holistic approach to meeting the child’s needs. 6 contributors
Paperback – 320 pages 3rd edition (August 1997) Butterworth-Heinemann Medical; ISBN: 0750605790 ; Dimensions (in inches): 0.76 x 9.64 x 7.44
Recommended by: Kate
Buy UKLCG OR TPLP
From the Heart : On Being the Mother of a Child With Special Needs by Martha Grady, Jayne D. Marsh (Editor), Carol Boggis
In From the Heart: On Being the Mother of a Child with a Disability, nine mothers explore the intense, sometimes painful, emotional terrain of raising children with special needs in eye-opening narratives developed from their parent support group meetings. The children who shape these women’s lives have disabilities that include autism, Down syndrome, Tourette syndrome, ADD, and multiple disabilities. From the Heart is organized around several themes: relationships with professionals; family life and school issues; and issues about the “self” and closest friends and family. Their experiences resonate with the common struggles of healing; being heard and understood; coping with life; and dealing with greater emotional intensity than most parents do. In revealing what is most important and most difficult for them, these mothers affirm the experience of other parents like themselves. From the Heart speaks to anyone who may know little about raising a child with special needs — until they have one and must then forge a strong family unit nonetheless.
Paperback – 149 pages (June 1995) Woodbine House; ISBN: 0933149794 ; Dimensions (in inches): 0.53 x 9.03 x 6.15
Recommended by: Kate
Buy UKLCG OR TPLP
The Child With Special Needs : Encouraging Intellectual and Emotional Growth by Stanley I., Md. Greenspan, Serena, Ph.D. Weider, Robin Simon (Contributor), Serena Wieder
Covering all kinds of disabilities–including cerebral palsy, autism, retardation, ADD, and language problems — this comprehensive guide offers parents specific ways of helping all special needs children reach their full intellectual and emotional potential.
Hardcover – 496 pages (January 1998) Perseus Pr; ISBN: 0201407264 ; Dimensions
(in inches): 1.55 x 9.47 x 6.42
Recommended by: Kate
Buy UKLCG OR TPLP
Changed by a Child : Companion Notes for Parents of a Child With a Disability by Barbara Gill
Parenting is always tough, but parenting a child with disabilities, serious injuries, or chronic illness can be a life-changing, profoundly disrupting experience. In Changed by a Child, Barbara Gill provides brief meditations and passages about the challenges, grief, faith, hope, and other feelings and experiences of parents who have a disabled child. Gill’s son has Down syndrome, and she writes with the authority and credibility of a parent who has been through it herself. The brief pieces in this small, handsome book are divided into three sections: “In the Beginning,” “Rounding the Curves,” and “Transformed.” It’s a credit to Gill’s experienced wisdom and her skills as a writer that this material never becomes sentimental or sugary.
Paperback – 336 pages (September 1998) Doubleday; ISBN: 0385482434 ; Dimensions (in inches): 0.94 x 6.74 x 5.54
Recommended by: Gail
Buy UKLCG OR TPLP
Views from Our Shoes : Growing Up With a Brother or Sister With Special Needs by Donald J. Meyer (Editor), Cary Pillo (Illustrator)
Although the number of books about disabled children has grown steadily, not many nonfiction books explore the feelings of a disabled child’s brother or sister. These unpretentious, honest snippets, contributed by 45 children ranging in age from 4 (“My Mommy and Daddy told me that Nicole was born very early and her brain got hurt”) to 18, seek to fill that gap. In talking about their sibs and their feelings, the writers admit to embarrassment (“I’m sure glad he doesn’t go to my school . . . if they find out that he’s my brother, they’d laugh”), anger, and jealousy. But at the same time, they show how protective and loving and surprisingly wise they are when it comes to getting along in a family that is different. Black-and-white sketches are scattered through the text, and a glossary of medical conditions and a helpful list of support sources are appended. Stephanie Zvirin
Reading level: Ages 9-12
Paperback – 114 pages (September 1997) Woodbine House; ISBN: 0933149980 ; Dimensions (in inches): 0.34 x 9.03 x 7.03
Recommended by: Meg
Buy UKLCG OR TPLP
My Brother, Matthew by Mary Thompson (Illustrator)
David understands his disabled little brother better than his parents do, although he feels frustrated and resentful at times as he would with any sibling. Told from David’s perspective, the story is realistic and accompanied by pleasant watercolors that focus on the two boys.
Reading level: Ages 4-8
Hardcover – 28 pages (September 1992) Woodbine House; ISBN: 0933149476 ; Dimensions (in inches): 0.38 x 9.88 x 8.04
Recommended by: Meg
Buy UKLCG OR TPLP
Angel Catcher by Kathy Eldon, Amy Eldon
After the death of her son Dan, Kathy Eldon and her daughter Amy created a special book dedicated to all he meant to them. ANGEL CATCHER, a guided journal for people who have lost someone close, gives to others what Kathy and Amy discovered during the years after Dan’s death. Its pages are filled with beautiful quotations and original art, but mostly it offers space–to record memories, paste photographs, or draw reminders of the loved one.
Hardcover – 128 pages Spiral edition (September 1998) Chronicle Books; ISBN: 0811817318 ; Dimensions (in inches): 1.20 x 9.11 x 7.49
Recommended by: Lori
Buy UKLCG OR TPLP
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