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Noah is a 4 year old little boy, who suffers from a rare genetic life limiting condition Pontocerebellar hypoplasia.
On top of this Noah also has a heart condition Bicuspid Aortic stenosis, Epilepsy, Dystonia (muscle spasms), Global development delay, is fed via a gastrostomy tube into his tummy, is unable to sit up unaided, walk or talk.
However, he is the happiest little boy, full of energy and character.
Noah requires a lot of specialist equipment that is not funded by the NHS, however is very expensive.
We would love to buy Noah an Eye Gaze computer which are roughly £4000. The Eyegaze Edge is an eye-operated communication and control system that empowers people with disabilities to communicate and interact with the world. By looking at control keys or cells displayed on a screen, a user can generate speech either by typing a message or selecting pre-programmed phrases, and much more! It would be amazing for us to give Noah a voice and take away some of his frustration of not being able to communicate.
We also need a specialist car seat, as Noah is out growing his normal one. We have been estimated £2500 for the one that meets Noah's needs!'
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