Our daughter Cerys was diagnosed with Rett Syndrome in March last year. Rett syndrome is a neurodevelopmental genetic disorder that affects girls almost exclusively. It's characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain, problems with walking, seizures, and intellectual disability. As the syndrome progressed, Cerys lost purposeful use of her hands and the ability to speak, this was followed by compulsive wringing hand movements, mouthing and plucking her own hair. The onset of this period of regression was sudden and has left Cerys with the inability to perform basic motor functions, severely disabling her and interfering with every body movement.

Cerys has no speech and no way of communicating her needs, Rett has taken away her ability to tell us whether she is hungry, thirsty or in pain. We've tried Picture Exchange Communication (PECs) to Applied Behaviour Analysis (ABA) therapy and more besides but, all are dependent on the use of their hands. This path has led us to Eye gaze technology, these devices give girls with Rett independent access to their “voice” by capitalizing on their eye movements that they naturally use to socially engage and connect with people. Essentially, their eyes represent their index fingers for pointing.

Cerys is using an eye gaze device at her SEN school and picked it up really well. We need Eye Gaze to give Cerys a voice at home and when we are out. These devices are very expensive and we need your help to fund it. see link for more info:

http://www.dbmhresource.org/uploads/2/2/5/7/22571778/closing_the_gap_lariviere_eye_gaze_december_2014_1.pdf

We are donating at least 25% of the money raised to the Rett UK charity who promote, support families and encourage research – to enable improvements in identifying new therapies and treatments for people affected by Rett syndrome and ultimately a cure.