Wednesday, 2 May 2012

People power

Yesterday we heard back from the DLA (Disability Living Allowance) and they told us that we weren't entitled to any help from them as they felt E was a completely "normal" baby for his age.

K and I would absolutely love for this to be the case, but unfortunately it's not.

We're realistic enough to know that when a genetic test comes back saying that your baby has Williams Syndrome - then he has Williams Syndrome.
We're realistic enough to know that when your baby has a heart condition, a hernia, various other medical issues and a team of professional carers, then he's not completely "normal".
And we're realistic enough to understand that when, at the age of one, he's only rolled over twice, can't move or crawl yet and he doesn't sleep for more than 4-5 hours a night - he's not completely "normal.

None of this changes the fact that E is a wonderful little man and one of the happiest babies I've ever come across (!) but we do need the experts to help us encourage him to reach his full potential.

So we're asking for your help please. I've put together a short survey - just 4 questions with multiple choice answers that we'd really appreciate you answering. It should only take a minute. We'd just like to get as many people as possible telling us at what age their child started moving and how many hours they generally slept through the night at the age of 1. We'll then package the result with letters from the Williams Syndrome Foundation and information from E's medical carers, and hope that the DLA come back with a different answer.

You can answer the questionnaire either by clicking on this link: or by clicking on the box-out to the side of this page.

Thank you!

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