Caring For Your Child With
Hydranencephaly
Information For Families
This book contains both information
and hope for families of children with Hydranencephaly. This is the 2nd
edition of our book and is greatly expanded from the first.
When parents are given the diagnosis
of Hydranencephaly for their child they are often told that there is no
hope for their child, that the child will never recognize them, and that
they won't live long. Unfortunately many children do die at a young age,
however many do not. In this book are the stores of over 50 children,
some of whom have now gone Home to Heaven but most are still alive and
are daily disproving the grim prognoses. As you read the stories you
will meet families who are going through experiences that are very
similar to yours
This book also contains practical
information on caring for your child, with information from various
websites along side the personal experiences of families. It is not mean
to be a medical textbook, but to provide practical information all in
one place. Think of it as a "portable website"
Some chapter titles are:
What Causes Hydranencephaly
About Hydranencephaly
Sensory Stimulation for your child
Taking Care of You
How to "read" your child
Physical Development of a child with Hydranencephaly
Feeding Your Child
There is also information on the
various conditions that often accompany Hydranencephaly such as:
Hydrocephalus
Epilepsy
Illnesses
Breathing Support
This 2nd edition of the book is
almost 4 times as long as the first one was and contains a lot more
information along side personal experiences of families in each of the
areas discussed. Due to the length of the book it is being released on
cd rather than in print. Parents can then print out just the information
that applies to their child at any one time.
Funds donated in memory of children
with Hydranencephaly who have died are being used to give each family 2
copies of the book free of charge. One copy is for personal use and the
2nd is to be given to a professional involved in the care of your child.
Further copies are available for a suggested donation of $20
To purchase a copy of
the book, please contact Lynne
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