O is for ‘Oh, that fundraising thing we’re doing!’

It’s quite unusual to come across anyone who knows what Rett is. One in every ten thousand girls will get Rett, which makes it the second most common disability in girls after Downs. But had you ever heard of it? I thought not.

Most Rett girls have a mutation on one of their chromosomes but not Georgie, oh no, hers is entirely absent. It was probably watching My Little Pony the day it was called to action and so never quite arrived. This tiny little building block- or its absence- causes all kinds of excitement… the biggest one being that Georgie has no verbal language skills and, unfortunately, she can’t control her hands enough to use sign language. As you might imagine, this can cause issues- she can’t tell us if she’s in pain, or if she’s about to have a seizure or if she needs the loo… she also can’t tell us to move out of the way of the television because her favourite program is on and she’d actually quite like to watch it in peace.

And that’s where the eye-gaze technology comes in, and, ‘Oh, that fundraising thing we’re doing.’ Because it will actually revolutionise her life to be able to say ‘I don’t want to listen to you chirping on Mum, I want to listen to the radio,’ and, importantly, ‘I’m not wearing that AGAIN. Pink is so not my colour.’ So on January 1^st I re-joined the world of social media – after having been away for 2 years- (it was the photographs of food that set me over the edge- who wants to see what someone else is having for breakfast?!!) – I am back in the world of twitter and facebook and blah, blah, blah. Only for Georgie would I do this… I’ve already seen four different pictures of people’s food, I may cry if I see any more.

So far, we’ve managed to get our story in the Telegraph and Argus, the dizzying heights of the Keighley News and tomorrow I am going on Christian radio to share our story. We have also raised over £300 on our JustGiving page- Thank God. And so our little lovely lady may just become a local celebrity- I only hope that her first eye-gaze phrase is not, ‘Daaarlings… I need my own agent!’