The book “Why I Am Me” was launched by the CHARGE Syndrome Association of Australasia in December 2011 in conjunction with International Disability Week.
“Why I Am Me” is a story about a boy called Sam who has CHARGE Syndrome and his friend Jess. As the story progresses Jess learns about CHARGE Syndrome and the challenges Sam faces on a day-to-day basis. Written by Carry Ward and Marie Patterson with illustrations by Penny Levett, the idea for this book was sparked by questions asked by a young person with CHARGE. As a result the book is written from a unique perspective. The story is supported by medical information, diagrams and photographs of children and young persons with CHARGE in New Zealand and Australia.
Those who are born with the CHARGE Syndrome find enormous strength from their family and friends, teachers and professionals who work with them to overcome and cope with the daily struggles of being affected by the condition.
“I laughed and cried both times I read this book. A great resource that will help everyone understand Charge Syndrome”. Teacher of children with hearing and vision disabilities.
This book is inspiring, its story and illustrations are engaging for both children and adults. The information is concise and easy to understand and the book has a detailed index. There are even tasks included for the reader that allow them to experience what it is like to have CHARGE. As Sam says, “Put yourself in my shoes.”
Charge Syndrome is a recognisable (genetic) pattern of birth defects, which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE Syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Most have hearing loss, vision loss, and balance problems, which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with Charge Syndrome often far surpass their medical, physical, educational, and social expectations.
“Why I Am Me” is a must read for those whose lives are touched by a person with CHARGE. All profits from the sale of this book go towards improving the health and welfare of children and adults with CHARGE Syndrome across Australia, New Zealand and the Asia Pacific region.