I shall never forget that day, I stood in a room, my husband by my side, with an MRI brain image on the wall in front of us, I didn’t understand what we were looking at, but I understood the words that were being said, I heard every other but it still went in “Brain damage”, “bleed”, “this changes everything”.
My 4 month old baby had brain damage, where there should be pretty brain there was a large black spot, how did this happen, as I type this post I am shaking and crying a little, I did not realise it still affected me still today, as most days it just is, it isn’t talked about as we have to get on with the everyday, the helping the most amazing little boy in the world, my eldest son.
Precious isn’t he, he deserves the world, he deserves the best equipment and therapy money can buy, but not only does Grayson deserve that – EVERYONE DOES!
Brain Awareness Week is 10/16th March, if you had asked me 5 years ago when it was I am not sure I would be able to answer, but having a child like Grayson has enriched me, he has made me a better person, don’t get me wrong I would always help charities, I completed 5ks, 24 hr famines and charity events, but now I wish every day I can make it count for someone.
On the 27th Feb 2014 that happened, I was kindly asked to go to the Royal Hospital for Neuro-disablilty in London and learn all about #iGaze a life changing piece of technology, which allows people with severe brain disabilities to live life as they should, just as we do, with a voice.
I can not explain to you how inspired I was meeting Dr Richard Bennett, him sharing his story to us through #iGaze and then being given the chance to try the equipment for ourselves, I managed to even upload a Facebook Status using just my eyes.
Here is a little more info about the campaign, use your brain and read PLEASE, because this could be someone in your family now, tomorrow or maybe in the future, allow people to live a full life, allow my son to have the opportunity maybe in the future to have equipment available to communicate with me!
Have you ever felt that feeling of not being heard? Whether in a room of people, where no one takes the time to listen. Or whether your voice is ignored? Or whether you don’t have the confidence to say what you feel?
But what if your voice was only heard thanks to an incredibly expensive and hard-to-access machine? What if your voice only had a small amount of time to be heard, because other people needed to exercise their voices too?
Some patients, at the Royal Hospital of Neuro-disability, are unable to communicate, unless they have access to a very expensive piece of equipment, called EyeGaze. EyeGaze machines rely on eye movement alone, so patients with locked-in syndrome and other disabilities, can find their voices again, just with the flicker of an eye.
Everyone says the eyes are the window to our soul – and we know that sounds corny, but it’s true. Our eyes can say it all sometimes and can even give us away.
Everyone uses technology in a different way. Everyone communicates in a different way.
And we often take it for granted.
We invited a brilliant team of people – comedians, bloggers, campaigners and fashion icons – to come to the RHN and experience EyeGaze machines for themselves. We took away their ‘normal’ way of communication and let them experience just how precious this technology is.
And we filmed it.
So you can see for yourselves, just how important having a voice really is, and be inspired to give the patients at RHN, their voice again.
It is so simple, if you need more convincing then please take just 3 minutes to watch this video, learn more and hear from some amazing bloggers.
So give what you can, that is all I ask, if you can’t give then help us to raise awareness, so people like Richard, the patients are the RHN and even maybe one day Grayson have a Voice with #iGaze!