May is Williams Syndrome (WS) Awareness Month. And in particular the 18th May is the national gathering of families in both the US and the UK who live with someone who has this rare condition. And I couldn’t let that pass without a mention, so here I am to tell you about WS and why it’s important to me, and my books.
Williams Syndrome is a rare genetic condition that affects one in twenty thousand births and is caused by a spontaneous and random deletion of 26-28 genes on chromosome #7. The condition itself is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. But a far more fascinating trait that those who have WS share is their unique personalities. WS people are particularly friendly, overly social, and have an affinity for music. In a nutshell, they are everybody’s friend, will talk the hind legs off a donkey, and love a good boogie. Don’t we all, I hear you say. Well, not like these lot, I can assure you. I’ve been to many a party and gathering with them, because my son was diagnosed with WS at three months old.
It’s been a massive learning curve for me and my family, and we are still at the very beginning of this journey into special-needs parenting. My little trooper has been through life-saving open heart surgery, ongoing painful and invasive hospital stays, constant appointments, whilst also having to deal with those who are not so understanding when it comes to children with learning disabilities. But I wouldn’t change him for the world. His WS makes him exactly who he is, and that’s a fun-loving, hilarious, good-natured, upbeat little boy who is everyone’s friend. I can’t get through a Tesco shop without him having to stop every other customer to say hello and ask them how they are. He might even throw in a hug for good measure, too. He’s a joy to be around and lifts my spirit on a daily basis. It doesn’t mean he’s easy to deal with, not in the slightest. There are downsides to having the condition as well as the ups. But I won’t dwell on those. Not here. Here I will be celebrating Williams Syndrome and all that has come with it.
So why am I telling you about WS and my son? Well, he’s pretty much the very reason why I started writing again. I used to write as a child and into my teen years, but then life took over and I never found the time anymore. Ironically, the moment my free time was scarcely limited after my second son was born disabled, I suddenly found myself making the time. I had a lot of it when he was a baby―he never slept. And when I mean never, I’m talking never. He’d be up all night. So to keep myself amused whilst gently rocking him or pacing the living room whilst soothing him, I created stories in my head. Then, when I got the chance, I started writing them down. Slowly but surely, I was working on a couple of novels without really realising it.
My son is the very inspiration behind my Responsible Adult series of books. And, in honour of Williams Syndrome Awareness Day, Misdemeanor, Hard Time and Reformed are all going on a price promotion. So I thought I’d explain not only WS and why it’s a huge feature of the books, but also why certain things were written the way they were.
You see, being so overly social, so friendly, and not seeing the ill in anyone, a WS little boy made for a perfect character. Especially when giving him a bad boy big brother who has a past life full of juvenile delinquency and making him his sole carer. Because I defy anyone to not have their hearts melted by Flynn. And that was the whole premise behind the three-book series. How this little boy sees the good in everyone, when many of the other characters struggle to do the same.
All the characters in the book are flawed. Many are obviously flawed, others their flaws are skin-deep or buried beneath the surface. The whole idea was to show how these flaws make us human, and how Flynn sees beyond them all to the true person beneath. Because that is the beauty of WS. But that can also make these unique individuals extremely vulnerable in a society that isn’t as carefree and wonderful as WS people presume it to be. Like Micky says in Misdemeanor:
I wrote Responsible Adult as one book. Since publishing they have been separated into a three-book serial. It means there is a bit of a cliffhanger at the end of book one, something that I couldn’t avoid and I know it’s had its fair share of controversy, but there simply wasn’t enough room to put everything into one book. By the end of the three books, WS shines through. All characters grow, develop, and maybe the world does become like the fairy tale that Flynn always sees it as. Because that is how I want it to be―I want everyone to be accepted for who they are. And in Responsible Adult, although it is based in real-life and a gritty, raw piece of work, eventually everyone gets their HEA.
As you can kinda see here…
Responsible Adult was my way of raising awareness for a condition that has taken over me and my family’s life. It gave me a chance to have a crack at writing again, within a genre I’d come to love, and it’s an extremely dear-to-me series of books. When people say your book is like your baby, well, this is that and then some. Because my baby is actually in it. Something that I oftentimes wish I hadn’t ever done, but am also proud that I did as it’s given me this opportunity to talk about it. My hope is that those who read it, who meet Flynn, will see how he manages to brighten the life of his brother and brings out the best in those who come into contact with him.
This series is about having to grow up, having to make sacrifices, having to make tough choices, and having to take responsibility. Micky is nineteen and had to take care of his little brother after the tragic death of his mother. He’s already harbouring many a secret and had a past life of juvenile delinquency in a small town that he cannot escape from. Micky wasn’t ready, nor equipped, to be sole carer to a disabled child. And, although I am a fair bit older than he, and I, at least, made the choice to have a child, I still feel exactly like he does—juggling through life, making decisions and choices I feel completely unqualified to make. But that’s my lot as a mother. And that is Micky’s lot as a big brother. And eventually Dan gets involved in all that, too.
If you would like to give this series a try, then Pride Publishing have beautifully accepted to honour Williams Syndrome Awareness Day by offering all three books at a price of 99p each on 18th May 2018. Click on the three books to take you to the Pride site.
If you’d like to learn more about Williams Syndrome, then you can find out all the excellent work that the charities in both the UK and US do here:
These charities are solely run by the parents for the parents. They don’t receive government funding, they rely on donations. Without these charities, many families would be completely isolated in their communities, and I salute the brilliant work they do in raising awareness, giving information, and organising gatherings for all our WS people to chat, laugh, and dance at. Just like we all need to do from time to time. Which is where what I will be doign this weekend at the national convention and family gathering as I volunteer as a regional co-ordinator for the WSF in my spare time.
I’ll finish off by asking that we all try to be a little bit like our Williams Syndrome friends. Be nice. Be kind. Be friendly. And, using the WS motto, please, if only for today, share your heart.
Thank you for listening and giving me this opportunity to share a little of my heart with you all.
C F White xx
BEFORE YOU GO….
As of the 25th May 2018, the new data protection laws in the UK come into affect. That means I have to delete anyone who has signed up to this website to receive updates and newsletters and ask everyone to reconfirm their interest.
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