Disrupting disability and making a wish come true

On Friday night I was invited to a fundraising dinner for Reverse Rett, which supports research into finding a cure for Rett Syndrome, a debilitating neurological disorder. Rett Syndrome is not inherited; it is a spontaneous chromosomal mutation which prevents nerve cells in the brain from working properly, causing profound physical and communication disabilities. Research so far indicates the possibility of reversing the mutation and its effects.

My friends have two daughters and the youngest, Amy, suffers from Rett syndrome. She is only seven and she cannot walk or talk. She is permanently confined to a wheelchair. A couple of years ago her sister Abby (who is able bodied and very pretty and chatty) did a sponsored silence. She wrote on her fundraising page that she wished her sister could talk so that they could chat together.

Tobii PCEye GoThe Reverse Rett fundraiser included an auction and a raffle. I bought some raffle tickets and I won the big prize: a piece of eye-gaze  technology – Tobii PCEye Go – which will allow Amy to communicate with the outside world, and chat to her sister.

As you may or may not know, professionally I write a lot about technology and communication, so it is pretty cool that the combination of a sophisticated device kindly donated by Tobii and my bit of luck will turn Abby’s wish into reality. The PCEye Go works with a laptop,  but it also works with a Windows 8 tablet and has a wheelchair attachment for mobile communication.

Once Amy has got to grips with the PCEye Go, the plan is to get her a Surface Pro or other compatible Windows 8 tablet  This would allow her to communicate when she’s not at home or at school and would bring her life a lot closer to normal.

A mobile communication device will mean a lot more to Amy than our smartphones mean to us as for the first time it will give here the ability to communicate quickly and directly with people around her. She will also be able send texts and play games. Basically, it will make it easier for her to socialise.

I wanted to share this because disruptive technology is a central theme for technology writers. It is so great that technology can also disrupt disability to transform the lives of Amy and others like her and help their bright minds and personalities shine through their physical limitations. And it will help two little sisters chat together at last.

http://www.reverserett.org.uk/

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