Delve in to the moving true story of Sarah Lord. A child who doctors said wouldn’t survive the night, told through the eyes of her mother, Karen. Set in Lancashire, England, the story begins with life in a small village in the 1960s and how the dream of a happy life came to an end when circumstances forced an entirely different path to a road less travelled.
Single parent Karen believed that her daughter deserved the chance of happy, and as far as possible, pain free life. Against all odds, Sarah lived fully beyond all expectations, not just in terms of the length of her life but also the quality. No matter what obstacles were thrown in their way, they overcame them. Despite the many dreadful situations they found themselves in, humour and laughter were never far away. Karen battled against the medical profession for over two decades to get the best possible treatment but hit brick walls at every turn.
To say that Karen’s life is inspiring is an understatement. To say she perseveres against authority would be underplaying the significance of what she has achieved. Her story is guaranteed to play on your emotions, make you outraged at the extremes some of the medical team went to in order to get their way.
The story I’ve written isn't a happy one, so it beggars the question; “why write such a story?”
Well, it was winter 2015 when I gave a lift home to a lady I knew. I was'nt in a 'happy place' and something prompted me to tell her what had happened with my daughter. To my surprise, she told me of a story even more horrific about her own life.
I realise, many people have hard times but no one talks about them mainly because we don't want to upset other people. I'd been struggling to deal with two decades of fighting for better treatment for my daughter which led to a seven-year court battle with the NHS Trust. It finally ended with the 21 day rule settlement, meaning I was unsuccessful bringing the case to court.
My mother suggested I write things down to at least remove them from the constant thoughts in my head. My father had died in 2013 just a few weeks before the court case ended. Yet again I felt he had the most appalling treatment and wanted to complain to the trust about that. However, mum said I’d been through enough and nothing could undo what had happened and to leave it alone.
I’ve begun to detest a phrase I hear a lot in the media that: “Lessons will be learned” because they never are. Until you're in a situation that is mind numbingly devastating and you can’t for the life of you understand how these things have happened, the phrase “lessons will be learned” just makes you angry – it is of no comfort to anyone.
I began writing the horrors of my life in spring 2016 and had to break off many times. Even though I’d gone through them, writing them down was like re-living them. I wrote during the four hour sessions at home where I managed the dialysis machine. Sarah always falls asleep within an hour. Eventually, I finished it and it was a book in itself.
It was my utter distress; frustration and disappointment that we’d never get to face the perpetrators in court which led me to decide to publish what had happened. I felt it appropriate to add a little bit about myself at the beginning of the book for people to at least see, I wasn’t always this outspoken. But as I started to write, I realised, I'd always been the same.
I hope you enjoy the book and see that despite all the hardships we've endured, we are still a humorous family. Not many people know this but I'm related to a well known Lancashire comedian in the 1930s - 40s. He's my Dads Uncle Frank (on his mother's side) and I understand he was a bit of a rebel too. He even made a few films. Perhaps there's a comedy gene and our family have it.