In 1986, Jonathan Chamberlain and his wife Bernadette had their first child, Stevie, a daughter. Stevie was immediately diagnosed with Down’s syndrome. A few months later it became clear that she had a serious heart defect that required a ‘hole in the heart’ operation. Something went wrong during the operation and Stevie suffered a momentary lack of oxygen that left her severely brain-damaged. For the remaining seven-and-a-half years of her life she was blind, epileptic and unable to sit, let alone walk. She was profoundly handicapped.
Wordjazz for Stevie is the story of Jonathan’s life with Stevie and the deeply beneficial impact she had on his life. It is a story of great love. It is also the story of how this almost overwhelming surge of loving energy led Jonathan to found first the Hong Kong Down Syndrome Association, and then later another charity to take into China the same idea that the key to supporting children like Stevie is to support their parents – and to see the problem as one involving the whole family.
The story that Jonathan tells is made even more poignant by the fact that it deals also with his wife’s unsuccessful battle with cancer. In the end Jonathan is left to bring up his son Patrick as a single father.
This is a short book but intense and deeply moving. “This may be the most moving story you will ever read,” said Britain’s Sunday Telegraph.
Jonathan invented the word ‘Wordjazz’ for the title as a shorthand to express a complex of ideas. “I wanted a word to convey the sense of celebration – this book is a celebration of Stevie’s life,” he said. “Through me, Stevie has changed the world. That needs to be celebrated. And at the same time I want to give a sense that this book is not a straightforward linear telling of the story. It is simply the only way I could tell it. It is a story from the heart. I doubt I will ever write anything better. This is the core and essence of my experience with Stevie and Bernadette.”
Wordjazz for Stevie is available in bookshops in May 2010 (Asia) and November 2010 (UK and North America).