Saturday, 19 March 2016

Lennox-Gastaut Syndrome

James Walker (16) from the UK lives with his supportive parents Gina & Iain Walker and his doting sister Tash.

James is diagnosed with Lennox-Gastaut Syndrome which is a form of Epilepsy.

Unable to communicate but still attending school, James was able to use a special piece of technology that did allow him to communicate for the very first time, although this was only available to him for 30 minutes per week.
His first words were "Hello mum" and his proud mother Gina told The Telegraph newspaper, "Its mind blowing hearing your son speak for the first time, even though its a computer generated voice"

A fundraising process took place and £12,000 was raised in order to purchase James a "Tobii Eye Gaze"
A machine that allows James to communicate through a computer.
Now James has his very own machine, he now has a new lease on his once quiet life.
The eye tracking machine not only allows James to communicate but it also gives him control over his bedroom lights and the television too.

The technology that James uses helps people with limited or no speech due to stroke, autism, cerebral palsy, ALS, traumatic injury and more.
If you'd like more information on this technology please visit


James walker's mother Gina kindly agreed to an interview with me, in order to inform all of James' condition and raise awareness around the World.

Lennox-Gastaut is a really difficult to control epilepsy, usually drug resistant, and because of the amount of seizures it causes severe developmental delay.

James is totally dependant on us for all of his needs but has no brain damage, he has just not been able to learn anything due to the amount of seizures he has.
He was having hundreds everyday when younger then went to around 50 a day until he had the VNS implant a couple of years ago which dropped the seizures to around 10 a day.

He was only diagnosed with LGS a couple of years ago just before his VNS operation he has no diagnosis of anything else only the type of epilepsy he has so it seems he has always understood everything around him but never had any way of communicating with us or the world around him until he got to use the Tobii eyegaze.
It tracks his eye movements and speaks in a computer generated voice, what he looks at on the screen.

(if you look on tobbi dynavox website you can see our fundraising story there and how the machine  works)

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