I used to look after a little girl when she was at Nursery who has Rett Syndrome. She was with us before her diagnosis; I will never forget the anguish caused to her family by her diagnosis. Like many people, I had never heard of Rett Syndrome. I went on line and found some information about it, but not a lot. Then I tried to find a book about it to read up on it so I knew how best to support this little girl at Nursery. All I could find were various scientific tombs, mostly quite out of date and not easy to get your head round. Now, finally Andre Govier has written a book that really explains what Rett Syndrome is all about and how it affects girls. He does this by brilliantly putting into words the heart breaking story of a mother who very sadly loses her daughter to Rett Syndrome. This book will make you cry (have plenty tissues to hand) but it will also make you laugh. As an early years childcare practitioner who now specialises in additional support needs one to one work, I truly believe that everyone training in early years education as well as everyone training in paediatric medicine should read this book as a matter of course. I finished reading this book the morning of running the half marathon in Manchester as part of the Reverse Rett team - it totally inspired me and gave me even more determination to make it to the finish line.
All disabilities can be cruel. Rett Syndrome is cruel. The exceptionally well written book brings us the story of one little girls fight against that cruelty and a mothers fight for her daughter. A book that you have to keep putting down yet just have to pick up again. A hard read but a must read.
I am a support worker and I have been given this book to read by the mother of the lady I support who has Retts. It is honestly incredible and is such a beautiful story about such a beautiful girl. It is so honest about the love and care given to a loved one with disabilities. It is also highly highly emotional so grab a tissue or two