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This is our lovely daughter, Lysbeth. When she was 3 years old she was diagnosed with Rett Syndrome. Because of Rett she cannot walk, she can no longer use her hands or feed herself, she cannot run around and play all the usual games with her sisters that a typical 6 year old should be able to. Because of Rett she now has epilepsy, respiratory issues, sleep issues and involuntary movements. Life should not be this cruel or this difficult for anyone.

This was not always the case for Lysbeth.  As a baby she demonstrated all the skills that babies do – she began to talk, to bum shuffle, she could use her hands to feed herself and do typical baby things like build towers of bricks.  She knew her colours, her animals, parts of the body.  She developed the same way as other babies.  And then Rett came along and stole all of the tools in her box for Lysbeth to be able to use her voice, hands, her mobility. 

If you research Rett Syndrome much of the findings will tell you that people with Rett have severe intellectual disability.  This is not true!  More and more research is coming out now to show that people with Rett do not have intellectual disabilities but they do have great communication difficulties.  So, Lysbeth’s learning skills have not disappeared, they are still there but trapped by Rett so that she cannot demonstrate them.

There are ways that people with Rett can communicate! But how do you get a person, who is non-verbal and has little or no hand use, to communicate?

The good news is that Rett UK knows how.

Over the years this wonderful charity has supported us on this amazing, long and often difficult communication journey with Lysbeth. She has developed a good Yes and No method - looking at us for Yes, looking away for No. Rett UK has supported us with the loan of a communication device which provides Lysbeth with a comprehension language system - she can use her eyes to activate cells on the screen.  It’s not always easy for her but when was learning a language ever easy? But it is worth the effort, especially when those amazing communication moments happen - like when she told Daddy for the first time – “I love you, come back!” Daddy works away from home so this moment was both moving and wondrous, to say the least. 

We have even progressed onto learning letter sounds.  I had no idea, until two incredible ladies from Rett UK came to visit Lysbeth, that Lysbeth had already learnt some letter sounds. And so we began to learn more and now Lysbeth can use letter boards to choose letters to spell and words to write. Don’t be under the illusion that this spelling and writing comes easy - it doesn’t - it takes a huge amount of time to write anything because Rett gets in the way, making it difficult for Lysbeth to choose the letters and words she wants and we know she desperately wants to show how capable she is.

So you see, Lysbeth doesn’t have an intellectual disability - she’s very much in there - and she needs the help and stimulation that Rett UK can provide.  

Rett UK has a mission and that mission is:

“That everyone with Rett Syndrome is given every possible opportunity to achieve their individual potential so that they may live their life to the full.”

Lysbeth is beautiful and so very brave. She is the bravest person that I know. She keeps on going, she never gives up. She has a passion for noise, laughter, family and chaos. And those who engage with her, know her and love her, are rewarded beyond their imagination. My little girl’s body is imprisoned by Rett and so this makes it even more crucial that I try somehow to give her a voice!! And Rett UK is at the forefront of helping us do this. 

Please donate if you can or share our page so that Rett UK can continue to support and help improve communication for Lysbeth and those others with Rett Syndrome.  

Sincere thanks, 

 Eva