UPDATE: We have now raised the full £10,000 and purchased Georgie's eye-gaze machine. We are so incredibly grateful to everyone who shared our page and donated their hard earned money. So to everyone who baked cakes, ran - and sang- their hearts out and even shaved their heads, thank you... we have been blown away by your support and we thank God for you all.

Our 4 year old daughter, Georgiana, has a profound and rare disability called Rett Syndrome. Essentially, Georgie is missing a chromosome. Unfortunately, this chromosome is vitally important in the development of communication and physical skills. Georgie cannot speak at all and cannot use sign language as she is unable to control her hands: this means that she cannot tell us anything. She is locked in. Many researchers believe that Rett girls have a good understanding of the world around them and can develop skills with specialist support, however, without the means to communicate, those skills remain undeveloped, which must be extremely frustrating for Georgie as well as dangerous because Georgie cannot tell us when she is in pain. Rett Syndrome causes epileptic seizures in Georgie and she has almost continual epileptic activity in her brain. At the moment, Georgie has no way of telling us that she feels unwell enough to lead to a seizure.

But there is a solution! An electronic eye-gaze machine would enable Georgie to communicate, it would also enable her to have some control over her life- from what she listens to on the radio and watches on television to allowing her to let someone know she needs the toilet: all massive things for her. The eye-gaze would really transform her life- enabling her to make herself heard. The eye gaze program and computer costs approximately £10,000 and that’s why we’re embarking on a year of fund raising.

Our beautiful, funny, charming little girl is adored by everyone who knows her and we would love to provide her with the opportunity to gain some independence.