Her condition is hard to describe in few words so have included a link to the condition description for you (or visit our page on Rett Syndrome).

https://reverserett.org/about-rett/

It is a very severe syndrome unfortunately and we are currently in the midst of Ruby’s regression where we are seeing the few things she could do are disappearing so its a really difficult time. Ruby cannot walk or talk or feed herself, she suffers seizures, has breathing problems to name but a few symptoms.

We have a fundraising account that we have set up where we are raising money for equipment she needs – one of our original successful campaigns secured Ruby a Tobii (dynavox) Eye Gaze computer/sensor which enables Ruby to use a computer with eye movement. This is the key to us being able to communicate with her. Ruby has a huge personality and we get to see a lot more of that when we use the eye gaze computer and get to interact on an immediate and obvious way. We thank everyone who has contributed over the years to our various fundraising events.

Payments for tickets to any of the events we run please get in touch by contacting us on our contact methods!

We appreciate you liking our fundraising page and helping us provide equipment for Ruby – we also ask you support Reverse Rett by liking their page to raise awareness. They have been incredibly supportive to our family during the time of diagnosis and continue to do so at https://reverserett.org