Friday, 23 August 2013
The struggle with Williams Syndrome
I usually find this blog very easy to write. There are numerous things on a daily basis that make me smile, but this week I've been stuck. Each time I start to write up an amusing anecdote, the words won't form properly. So, whilst I generally like to keep this blog light-hearted, I've decided to use just this one posting to talk about what's really on my mind today.
Many of you know that little E has Williams Syndrome (WS). Because it's so rare the parents and carers of WS people form communities where we share tips and provide encouragement for each other (bringing up a child with WS can be a struggle sometimes).
Very sadly, our community had two young children pass away this week. It's heart-breaking on so many levels. These children (and adults) fight so hard every single day of their lives to achieve what comes naturally to most of us. And they do it with big smiles on their faces - making sure that everyone around them is as happy as they can be.
E goes into hospital again next week for another MRI on his heart. He needs more surgery and the consultants are using the MRI to check if they can get away with keyhole rather than open heart this time round. WS people don't deal with sedation very well so each time E goes under we're rolling the dice with his life. But we don't really have much of a choice. If we don't give him the operation, his time with us will almost certainly go from years to months.
He's an amazing little boy - just like the other two little children were - and my heart goes out to their families.
I'm sorry that I haven't left you with a smile today, but it felt wrong not to acknowledge what's happened.
I have no doubt that within a few hours of this being published something will happen to get me chuckling again and I'll be back next time with a little slice of humour.
Williams Syndrome is a non-hereditary, rare disoder caused by an abnormality in chromosomes. WS people have a unique pattern of emotional, physical and mental strengths and weaknesses. Along with medical issues such as possible heart defects and occasional kidney damage, they have developmental issues and become anxious very easily. They are also some of the friendliest and cheekiest people I've ever met.