Please welcome CF White back to the StudioBlog. CF is here to raise awareness about the upcoming Williams Syndrome (WS) Awareness Day. So for the first time, we are passing the StudioBlog over to our friend, CF White.

Share Your Heart:

Raising Awareness for Williams Syndrome

 

 

Thank you so much for having me on the StudioBlog. Today is a rather special day for me—it’s the international Williams Syndrome (WS) Awareness Day, so what better way to celebrate than to tell you all about WS and why it’s important to me, and my three-book Responsible Adult serial.

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 ripped from me 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 us 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:

“He’s an eternal child. Sees the world like it should be in a fairy tale, minus the evil characters. Everything is bright and beautiful and everyone is his friend.” Micky hesitated. “It’s a real shame that life isn’t like that. Because a world full of Flynns would be the one I wanna live in.”

Purchase Misdemeanor by clicking on the buttons below.

Purchase Hard Time by clicking on the buttons below.

Purchase Reformed by clicking on the buttons below.

 

I wrote Responsible Adult as one book. Since publishing they have been separated into a three-book serial. There simply wasn’t enough room to put all of them into one book. It means there is a cliffhanger at the end of book one, but 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.

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. 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.

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.

If you’d like to learn more about Williams Syndrome, then you can find out about all the excellent work that the charities in both the UK and US do here:

www.williams-syndrome.org.uk

www.williams-sydrome.org

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.

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

About CF White:

Brought up in a relatively small town in Hertfordshire, I managed to do what most other residents try to do and fail—leave.

 

Studying at a West London university, I realised there was a whole city out there waiting to be discovered, so, much like Dick Whittington before me, I never made it back home and still endlessly search for the streets paved with gold, slowly coming to the realisation they’re mostly paved with chewing gum. And the odd bit of graffiti. And those little circles of yellow spray paint where the council point out the pot holes to someone who is supposedly meant to fix them instead of staring at them vacantly whilst holding a polystyrene cup of watered-down coffee.

 

I eventually moved West to East along that vast District Line and settled for pie and mash, cockles and winkles and a bit of Knees Up Mother Brown to live in the East End of London; securing a job and creating a life, a home and a family.

 

After my second son was born with a rare disability, my life changed and it brought me back to pen and paper after I’d written stories as a child but never had the confidence to show them to the world. Now, having embarked on this writing journey, I can’t stop. So strap in, it’s going to be a bumpy ride.

 

  

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