The story of a young girl with Batten Disease (NCL) as told through the eyes of her best friend. A book written and designed for both children and adults alike that helps to explain the prognosis and disease process. It helps explain the disease in its earliest stages so that people know what to expect as the progression occurs. It has helped siblings cope with changes in their brother or sisters behavior. It has helped both children and adults come to the acceptance that Batten Disease is a terminal disease. It has helped during bereavement and beyond.
Not only have families with Batten Disease benefited but a surprising number of family who have children with Tay-Sachs, Canavans, Krabbes Disease or other rare diseases have related to the experiences in this book.
See Story Outline & Details Page for a more comprehensive look at the book
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