Supporting Williams Syndrome

wsf-oliviaIt’s unlikely that you will have heard of Williams Syndrome before. It wasn’t until early 2016 when I heard of it myself. It was after my daughter Olivia had been diagnosed with a heart condition, and along with a host of other health and development issues she was suffering with led to the diagnosis of William Syndrome.

It’s a disorder which affects approximately one and 18,000 people in the UK.  The cause of Williams Syndrome is a tiny deletion of part of chromosome 7. Its not an inherited disorder, it’s just a random occurrence that could happen to anyone. It’s extremely rare; only 1 in 30 GP’s will have ever met someone with the condition, which is often why it’s so slow to be diagnosed.

Once we did eventually get the diagnosis, it was a bit of a relief really. Olivia’s first year was full of challenges – low birth weight, extreme colic, reflux and vomiting, problems feeding, poor sleep, issues gaining weight, refusal to eat solids and generally not meeting her milestones and very much being in the ‘failure to thrive’ category. She was then diagnosed with a rare heart condition, which in turn led us to the diagnosis of Williams. Babies with Williams Syndrome also often suffer from hypercalcimia, which is when they have too much calcium in their system. This causes a host of problems for them (I liken it to feeling like you might feel in the first trimester if you’re unluckily enough to suffer – basically I think you feel like utter death and just want to curl up and cry the whole time, which is basically what the poor girl did for six months). Luckily once it’s picked up it can be fixed and treated quite easily with special formula.

Obviously once you get the diagnosis, not all these issues disappear. But it’s amazing how reassuring it can be just to know the reason behind them all. Also the UK (well my area anyway) is fantastic at supporting children with additional needs, so post diagnosis you’re suddenly thrown into huge support network. We regularly see a speech and language therapist, physio, occupational therapist, a cardiologist, endocrinologist, community pediatrician, another hospital based pediatrician, community nurses and a dietician… I think that’s it. Anyway, there’s a huge team of people supporting Olivia now, helping her to be the best she can be.

The Williams Syndrome Foundation

Even before we had the official diagnosis we got in touch with the Williams Syndrome Foundation who were so helpful. Once we had the diagnosis we became members and we look forward to the support and guidance they’ll give while we raise our very special daughter,

The Williams Syndrome Foundation support families affected by Williams Syndrome, as well as funding research into the disorder. They solely rely on donations which is why I want to do as much as I can to help them.

So 10% of all profits from Fred & Olive will go directly to them. In addition all profit made from any item using the wonderfully bright and cheerful print Clare Emily will go to the foundation too.

One of the traits of Williams Syndrome is that they have a beautifully happy, jubilent personality. Olivia is literally a ray of sunshine. She brightens up any room she goes into. Her smile is the most illuminating thing – you can’t help but beam yourself when you get a grin from her. And she will literally smile at anyone and everyone. It takes us twice as long to go to the shops as we are constantly stopped by people (mainly little old ladies!), remarking on how cute and gorgeous she is! I really feel so lucky to have her as my daughter. She has such a wonderful spirit and her cheeky little personality is starting to come out now she’s feeling better. I can’t wait to see her grow into a wonderful little toddler and young person. I’m 100% sure that she will bring us so much laughter and happiness in the future. The good times will surely outweigh the bad.

I do have worries for her for the future. She’s unlikely to live a fully independent life. But then who does? We all need love and support, she will just need a little bit more than most. But the work the Williams Syndrome Foundation do will help ensure she gets what she needs at all stages. So please visit their site (http://www.williams-syndrome.org.uk), have a bit of a read and if there’s ever a time in the future when your hear someone talk about Williams Syndrome, you’ll be able to say ‘oh yes, I’ve heard of that’.