Please help us give Lucy a voice!
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Please help us give Lucy a voice by gifting her an Eye Gaze device!
Lucy is a (beautiful) soon to be 13 year old girl who suffers with Rett syndrome.
Rett Syndrome is a rare neurological condition which most often strikes previously healthy little girls between their first and second birthday, leaving them with multiple disabilities and medical complexities for life. Most children and adults with Rett are unable to speak, walk, or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal, and orthopaedic issues are common. Most people with Rett syndrome are severely disabled and will need round the clock care for life.
Research has shown that people with Rett Syndrome do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.
Rett syndrome has taken so much from Lucy; the ability to talk, walk, use her hands and even eat orally are just a few. Lucy requires 24/7 care and relies on the help of others to manage all activities in life.
Rett Syndrome is sometimes referred to as locked-in syndrome - where the person's brain in functional but their body lets them down. While Lucy is unable to do so many things in life, sadly she is totally aware that she is unable to do them. This makes life very frustrating and lonely. Lucy can understand instructions and gestures from people but has never been able to communicate back, except for basic ‘noises’, laughing, crying, giving her beautiful smile or infectious giggle. This could be helped with an eyegaze device. The Eye Gaze device works by tracking Lucy’s eye movements and correlates it with information on the screen.
With support and training, the device will enable Lucy to talk with her eyes, by constructing sentences via eye pointing to the correct words and symbols.
As well as offering communication, the device can also be paired with Alexa, the tv and other smart devices which will offer Lucy even more independence.
The Eye Gaze device will enable Lucy to communicate with people using her eyes. Lucy will be able to ask for things she needs or wants, tell us if anything is hurting during difficult times, and most importantly, have an opinion. Lucy will need a lot of support and assistance to learn to use the device and we are ready for the ride! This is something we have been holding out hope for since her diagnosis at age 2. Personally, as her mother, I have always longed for the day I hear ‘I love you too’ in response to the many ‘love you’s’ I dish out throughout the day and I will always remain hopeful.
For more info on Rett Syndrome please follow these links:
Here is a link to Smartbox, the manufacturer of the device:
We are also happy to share that we have full backing and support from Lucy's school, to continue Lucy’s Eye Gaze journey when she is at school.
If this is something you can contribute towards, Lucy would be eternally grateful for gifting her a voice.
Thank you.
If we were to be lucky enough to get to our target, any remaining money will be donated to @rett uk, a charity that has helped us and will continue to help us throughout Lucy’s Eye Gaze journey including supporting with a free 12 week training course. Many thanks to Abigail at Rett UK.
Organizer
Katherine Mccready
Organizer