By Luke Bartlett- Express and Star
A mother whose daughter died from a rare illness has told her story to raise awareness of the disease.
Sara Meredith, aged 41, from Walsall, teamed up with writer Andre Govier for the book about her late-daughter Olivia, who died from Rett Syndrome aged nine in 2008.
She described the book, Living Like Livvy, which aims to raise funds for the charity Reverse Rett, as no-holds barred.
Mrs Meredith said: ‘About a year ago I got a call from Reverse Rett and they asked me if I would mind speaking to a writer about Olivia.
Andre had been fundraising for many years and he decided to use his talent to get my words down into a book so we could raise money for Reverse Rett but also raise a lot of awareness.
Rett syndrome is a neurological condition – if you imagine epilepsy, Parkinson’s, autism and cerebral palsy all rolled into one.
Olivia was born and developed normally right up until two weeks before her second birthday when she just started to scream and scream and scream.
That was when she went through the regression period where she lost the ability to talk and communicate.
It took us until she was four until she was finally diagnosed – doctors just had no answer at first.
I had Googled all of the symptoms previously and had come across Rett Syndrome. When it was raised she might have Rett Syndrome it broke my heart.
Our hearts were broken but at the same time we had to make a decision as a family – we don’t know how long we have got in life so we have to live it.
It was family picnics, spending time at the park, all the things that everyone said Olivia could not do she pretty much did.
She did ice skating, she did rock climbing and canoeing – we just made the most of it.’
She continued: ‘Olivia was diagnosed at four and we lost her at nine-and-a-half, so we had five years. We had some moments.
It is crazy in those five years there was quite a few times I would have expected to have lost her – her seizures got out of control one time.
They told us once she lost her walking she wouldn’t get her walking back and in the last year of her life she walked – whatever you told her she wouldn’t do, she did. We started a charity called Livvy’s Smile, I am always out and about.
For the first year after Livvy died, I did not even want to hear the words Rett Syndrome because I hated it with a vengeance.
But then I thought that is not really honouring Livvy and also I have got so much knowledge to share that could help others.’
Olivia has four surviving siblings. The brave mother said the process had been a hardship and that reliving the memories had been a raw experience.
But she vowed to not give up fighting and to raise awareness with the book – which she hopes will make those reading smile and laugh.
All royalties earned from the book are going to the charity Reverse Rett
Mrs Meredith said: ‘Her seizures were horrific – when her first seizure happened, the same night she had 26. The following day she had 106. We finally got some control but she was never ever seizure free.
It has been therapeutic by all means because when you lose a child the last memories are really hard.
Going through the book it has given us the opportunity to remember a lot of the good times.
It has also been quite raw because I have had to walk through a lot of the hard times again – my brain had protected me from a lot so it has been like ripping the band aid off again but it has been worth it. If it raises awareness and funds then it has got to be worth it.
Olivia would not have give up fighting so I dare not. You will walk through some of the worst days of my life but also some of the best – it is no-holds barred.
It is definitely one you are going to need tissues for but I am hoping it is also one that will make you smile and make you laugh.’
The book, which sold more than 100 copies in its first week, is available on Amazon for £10.75 in paperback or £7.01 on Kindle.
All royalties earned from the book are going to the charity Reverse Rett.