About

This is, primarily, a blog about our little boy, Alex.  He has an undiagnosed genetic condition which has resulted in global developmental delay with a visual impairment.  In reality what this means is that although he’s just turned 7, he’s pre-verbal (currently babbling beautifully) and is currently scooching himself around in a bum shuffling kind of way proving himself to be a wondrous duster as well as cheekily trying to reach and grab at things that are not his! He needs help with every single every day activity and sometimes his hand/ eye co-ordination is off.  It’s bang on, however, should you offer him a chocolate biscuit…

He’s a mystery, an enigma and utterly utterly gorgeous.  He’s also cheeky.  And funny.  We’ve created this page for you to keep up to date with him, watch his progress and track our fundraising efforts.  Thank you for visiting x

You can find his Facebook page here:

https://www.facebook.com/asalexgrowsup

We also had a piece in the paper a couple of years ago for Undiagnosed Children’s Awareness Day and it still gives you a good overview of us, and us with Alex:

http://www.telegraph.co.uk/health/children_shealth/10780061/Trials-and-consolations-of-a-syndrome-without-a-name.html

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