Rett's Syndrome.
I realise that here is some corking stuff on the board at the mo but give this a minute or two please. Someone I know has a daughter with Rett's Syndrome. I had never heard of the disease and it's like "fucking WHAT!?" ...it's so unfair and awful. The family continue everyday to fight tooth and nail for a better life for Esmé and all who suffer from it and they made this video to help raise awareness. Also Esmé is a little champ.
It's an fb vid (sorry etc) but feel free to share. You want to help out, that's welcome too. www.gofundme.com/esmesallstars
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unclepills, Mon 15 Sep 2014, 7:09,
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fuuuuck
that's a blummin nasty ass syndrome. BTW (and this isn't a plug) might be worth them checking out alternative eye gaze tech - it's *really* coming down in price at the mo. (I work for a company devving eye gaze games for special needs kids)
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wideeye slightly pickled, Mon 15 Sep 2014, 9:12,
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Is that similar to iGays that Tabs uses? (also good for finding public toilets when you're caught short)
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Fray Brentos *mega-belms*, Mon 15 Sep 2014, 9:56,
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it's harsh
just as your child gets to the age where it starts talking and grasping and examining.... it's taken away. They have a vid of Es talking at 18 months. I'll pass the eye gaze tech advice on. Can you gaz or comment with the link you most recc please. Thanks lots of bunches.
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unclepills, Mon 15 Sep 2014, 11:23,
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yep
but they all seem to be using that background music these days.
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unclepills, Mon 15 Sep 2014, 12:23,
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It's the mutation of one tiny part of a chromosome. If they can work out how to reverse that one tiny, tiny thing, research shows there's no real reason why they can't then lead a normal life.
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unclepills, Mon 15 Sep 2014, 12:28,
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