The Lissencephaly Book Shop

All books purchased via this page donates between 5 and 15% of the purchase cost to the UK based Lissencephaly Contact Group. You just pay the normal Amazon price. Click on the book pictures to take you direct to Amazon to buy a book or find out more. Click here to find out about Amazon Associates. Currently there are 22 book titles in the shop.

Books...

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 UK Lissencephaly Contact Group which is a charity providing news and contact to over 150 families in the UK, Europe, Africa and Australia.

A Headbanger's Ball: Real Family Life with a Disabled Daughter
by Sandra Murphy

How do you cope when your baby is born with a severe and life-limiting brain disorder? A Headbanger's Ball is about unconditional love and acceptance - how a family coped, cried, laughed, celebrated and preserved their sanity - how they all joined Amberlie in her fight to stay alive, yet still functioned as a normal family. Little Amberlie Murphy was born with lissencephaly (a smooth brain). In her short life, however, if she knew nothing else, she knew she was greatly loved and wanted by her family - so much so that her dedicated mother, Sandra, has written this moving and often harrowing story commemorating Amberlie's seven years. The book is a testament not only to her undying love, but also to her gratitude to the medical profession for pulling out all the stops in an effort to help Amberlie.

About the Author
Sandra Murphy was born and grew up in south London. Before her marriage in 1986, she worked in a housing association, as a personnel secretary, and as a personal assistant in a publishing company. After her disabled daughter Amberlie died, she became a teaching assistant and has attained various further qualifications in special needs and supporting education. She is also a member of the lissencephaly group.

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

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!)

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 ketogentic 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

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

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

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

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

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

Raising a Handicapped Child : A Helpful Guide for Parents of the Physically Disabled
by Charlotte M.D. Thompson

Hardcover - 288 pages Rev expand edition (October 1999)
Oxford Univ Pr (Trade); ISBN: 019513253X
Recommended by: Linda

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

One Miracle at a Time : Getting Help for a Child With a Disability
by Irving R. Dickman, Sol, Dr. Gordon

Normal and Handicapped Children : A Growth and Development Primer for Parents and Professionals
by Wilbur S. Thain

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.

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, no U.S. Previous edition: c1974. Line-drawn illustrations. Softcover.

Recommended by: Kate

Paperback - 320 pages 3rd edition (August 1997)
Butterworth-Heinemann Medical; ISBN: 0750605790 ; Dimensions (in inches): 0.76 x 9.64 x 7.44

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.
Recommended by: Kate

Paperback - 149 pages (June 1995)
Woodbine House; ISBN: 0933149794 ; Dimensions (in inches): 0.53 x 9.03 x 6.15

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.

Recommended by: Kate

Hardcover - 496 pages (January 1998)
Perseus Pr; ISBN: 0201407264 ; Dimensions (in inches): 1.55 x 9.47 x 6.42

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

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

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. -- Copyright � 1993 The Horn Book, Inc. All rights reserved.

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.

If you have read a book you would recommend to other parents of children with Lissencephaly or if you would like to add review details to a book above, email me here. Type your name, email address, book title, author and brief description and I'll add it to the page. Thanks.

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