A British author has recently published a new book about Rett syndrome – an ultra-rare condition which affects approximately one in every 12,000 young girls in the UK.
The condition, which has a somewhat low profile in comparison with other disabling conditions affecting children such as muscular dystrophy and cerebral palsy, is thought to be more likely to affect girls than boys.
In Bradford-based author Andre Govier’s case, his book has been inspired by the plight of a local family who recent lost their young daughter to Rett syndrome.
In fact, the entire story documented by the book is based on the experiences of Bradford resident Sara Meredith and her late daughter, Olivia.
Ms Meredith lost her daughter around ten years ago, when the young girl was just nine-years-old.
Olivia was born with Rett syndrome – but the condition did not worsen until she was four, Ms Meredith recalls.
“She walked, she talked and then 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.”
In his new book, Living like Livvy, author Mr Govier is hoping to raise awareness of the condition by retelling the family’s story – with a portion of the proceeds going to prominent charity, Reverse Rett.
“It is incredible because Andre has done such a credit to my words, so the story is so true to my heart,” Ms Meredith said, praising the writer.
“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,” she added.
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