"I HOPE everybody can learn that life is for living. We think we will do this in future and sometimes the future isn't guaranteed."

It is a decade since Sara Meredith lost her beautiful daughter, Olivia, to the rare condition Rett Syndrome. Olivia was nine and a half when she died.

According to NHS UK, around one in 12,000 girls are born with the rare genetic disorder affecting brain development and resulting in severe mental and physical disability.

Although Olivia was born with the condition it didn't manifest until later. She was four when she was officially diagnosed.

"She walked, she talked and all of a sudden she didn't. People find it hard to understand. We went through quite a lot because no-one understood. There was no reasoning as to why she walked and talked and then didn't," explains Sara.

The family, from the Midlands, hope to raise much-needed awareness about the condition through 'Living like Livvy.'

Written by Bradford author, Andre Govier, the book is based on the family's experience.

"It is incredible because Andre has done such a credit to my words so the story is so true to my heart.

"When she was diagnosed we thought we have to do stuff; we have to make memories. That is what we what we have done and the book is a legacy of that," says Sara.

Featuring a forward from the author Major Chris Hunter, the book is raising funds for the charity Reverse Rett which is funding research.

Andre's introduction to Rett Syndrome came through his friend, Al Dickinson whose daughter, Estelle, has the condition.

The pals met on the terraces supporting Keighley Cougars.

Andre, who has two daughters, has joined in fundraising events for Estelle such as the 127 mile Liverpool to Leeds walk.

Having previously written books, primarily to encourage young people to read, he decided to write a book about Rett Syndrome.

"Rett Syndrome is not brain damage. The brain is still working fine. It is a mutation of the MCEP2 gene in the DNA of a girl which gives a hideous cocktail of symptoms when the brain can no longer communicate with the rest of the body," explains Andre.

"The lights are on, somebody is at home, but they just can’t get out. If you could imagine having autism, cerebral palsy, Parkinson’s disease and severe epilepsy all rolled into one, then you are close to understanding what Rett Syndrome is. You don’t just have communication issues, feeding issues, hand movement issues, walking issues, seizure issues, bone and joint issues and breathing issues, you have them all. This is Rett Syndrome."

Andre spent a year researching the book and spent time with the Meredith family after he was put in touch with them by the coordinators of the Manchester-based charity.

"It quickly became apparent that whilst all Rett Syndrome families' stories are special, this family's story was more than just a bit special," says Andre.

He explains the book 'is told through the eyes of her fantastically patient, caring and resourceful mother, Sara Meredith.'

It also explains the two-year battle for a diagnosis. "So few doctors know of it's existence, that many parents have a long wait to establish the diagnosis," says Andre.

"The book then goes on to detail how Sara actually embraced the diagnosis rather than having a break down, she used it as a green light for go and chapters four and five give an amazing account of all the things Livvy achieved which many able-bodied girls would be proud of. She did canoeing, rock climbing, camping and even went around an ice rink at lightening speed with a national figure skating champion," says Andre.

From the age of 20 months Livvy spoke once - it involves Steven Gerrard's football shirt! Says Andre: "She said just one word and this was caused by Steven Gerrard - but you will have to read the book to know about that."

Since Livvy's death her family have raised money for a charity set up in her name giving severely disabled children special memory making days.

"When we first lost her I was so lost," says Sara. "Caring for a special needs child is 24 hours a day but we made the decision as a family to foster children with special needs so that brought some joy back into our lives."

Says Andre: "The book is not just about disability, but also about ability and making the best of each day."

"I hope Rett parents pick it up and find hope and make the most of the moments," adds Sara.

'Living like Livvy' is available from Amazon, or from the Reverse Rett website: reverserett.org.uk. All royalties from the book are for Reverse Rett.