Transforming Emma's Life
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We have started this page in the hope of raising awareness of Rett aswell as funds towards a Tobii Eye Gaze computer and associated equipment to help enhance Emma's life by allowing her the ability to communicate with us.
Myself, Ross and Clark will be doing a sponsored walk of the West Highland Way at the end of April.
Emma was born in October 2013 a happy health baby by the time she was 9 months old we were aware there was some development delay with Emma as she wasn't hitting the mile stones along with her peers, doctors and health visitors tried to reassure us this was normal but as parents you just get a feeling, so we continued to seek medical advice both privately and through the NHS eventually in December 2016 Emma was diagnosed with Rett Syndrome.
Rett Syndrome is an extremely rare neurological condition effecting only 1 in 12000 girls born each year. It robs Emma of any independence and any chance of a normal life. Emma's condition means she went through a regression period when she was around 18 months old any skills she had slowly started to learn like crawling, feeding herself and talking were lost in this regression and will never return to her, she now requires constant 24/7 care to meet all her needs as she is unable to do anything for herself.
Research has shown that people with Rett 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.
An Eye Gaze computer would allow Emma to use a mouse which is controlled by her eyes. Emma's eyes are the only part of her body she has control over, she would use them to pick symbols on the Eye Gaze which would then say what they are. Emma is showing great success using this at school and enjoys saying hello to her friends. We had one on trial and Emma was able to choose which film she wanted, this is a huge thing for Emma as TV is life. It would also allow Emma to choose what she has for meals and snacks and also communicate what is wrong with her if she is not feeling well, at the moment this is a guessing game and a process of elimination for us.
Unfortunately this is not something the NHS fund due to the cost of it.
More information on Rett and its effects can be found here.
https://www.nhs.uk/conditions/rett-syndrome/
https://www.rettuk.org/what-is-rett-syndrome/
https://www.reverserett.org.uk/what-is-rett-syndrome/
Thanks
Myself, Ross and Clark will be doing a sponsored walk of the West Highland Way at the end of April.
Emma was born in October 2013 a happy health baby by the time she was 9 months old we were aware there was some development delay with Emma as she wasn't hitting the mile stones along with her peers, doctors and health visitors tried to reassure us this was normal but as parents you just get a feeling, so we continued to seek medical advice both privately and through the NHS eventually in December 2016 Emma was diagnosed with Rett Syndrome.
Rett Syndrome is an extremely rare neurological condition effecting only 1 in 12000 girls born each year. It robs Emma of any independence and any chance of a normal life. Emma's condition means she went through a regression period when she was around 18 months old any skills she had slowly started to learn like crawling, feeding herself and talking were lost in this regression and will never return to her, she now requires constant 24/7 care to meet all her needs as she is unable to do anything for herself.
Research has shown that people with Rett 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.
An Eye Gaze computer would allow Emma to use a mouse which is controlled by her eyes. Emma's eyes are the only part of her body she has control over, she would use them to pick symbols on the Eye Gaze which would then say what they are. Emma is showing great success using this at school and enjoys saying hello to her friends. We had one on trial and Emma was able to choose which film she wanted, this is a huge thing for Emma as TV is life. It would also allow Emma to choose what she has for meals and snacks and also communicate what is wrong with her if she is not feeling well, at the moment this is a guessing game and a process of elimination for us.
Unfortunately this is not something the NHS fund due to the cost of it.
More information on Rett and its effects can be found here.
https://www.nhs.uk/conditions/rett-syndrome/
https://www.rettuk.org/what-is-rett-syndrome/
https://www.reverserett.org.uk/what-is-rett-syndrome/
Thanks
Organizer
Stuart Garioch
Organizer