A Carer’s Odyssey

Anna Chan with her new book

Oxleas Trust Carer Lead, Anna Chan, has been working on a book – A Carer’s Odyssey – which has now been published by Matador.

It tells the story of how Anna has coped with caring for her daughter Emma, who has a severe neurological disorder called Rett Syndrome and her husband’s mental illness.

In the volume’s Introduction Anna writes: “This book is about a journey - my journey of caring for my severely disabled daughter Emma and my husband Jeff who suffers from depression. It is also about the journey taken by other carers, and the knowledge and experience I have gained through my work as a Carers' Support Worker from April 2008 and my current work as Carers' Lead.”

Anna continues: “The odyssey has lasted, so far, for 18 years. It began when Emma was born, although for the first joyful year there was no hint of the pains, tribulations, trials and conquests to come. A child born with Rett Syndrome develops quite normally in the first year, then development starts to slow down. Skills that the child has acquired are lost. Rett Syndrome is a neurological disorder which causes severe physical and learning disability. The parents are faced with the challenge of getting to understand her and love her all over again.

“Jeff and I were determined to do the best we could for Emma. We tried different therapies to improve Emma's mobility and communication. One of these included a trip to China with Emma for cranial acupuncture treatment between November 1997 and February 1998. Although some of the therapies helped to improve Emma's abilities slightly, they were disruptive to our lives. In the end, Jeff and I decided it was more important to carry on with our lives as normally as we could.

“We managed to do most things normal people do: work; school; holidays, etc with the help of friends, family, neighbours and charitable organisations. Suddenly out of the blue in January 2007 Jeff had a breakdown. This affected me badly both physically and mentally.”

Anna said: “I am going to donate 50% of the royalties to the Rett Syndrome Research Trust UK, which is a charity set up by parents to fund research for a cure. The trust's website is www.reverserett.org.uk. The other 50% will be used towards my daughter Emma's further education. However, if I get funding from my local council I will then donate the remaining 50% to various carers’ charities.”

Published on 7th January 2011