This year I am running the GNR for an absolutely amazing charity, Rett UK. Through work I met one of the most amazing women I have ever had the pleasure of knowing, Eva is the mother of 4 beautiful girls and is a teacher at kings priory school. Lysbeth, her second youngest daughter, got diagnosed with Rett Syndrome when she was just 3 years old. This is something I had never heard of as I imagine you probably haven’t either. To do this justice I’m  going to follow this with Eva’s own words if you could take the time to read and donate anything it would be much appreciated, thank you!

“This is our lovely  daughter Lysbeth. When she was 3 years old she was diagnosed with Rett syndrome. Because of Rett  she can not walk, she can no longer use her hands or feed herself, she can not run around and play all the usual games with her sisters that a typical 7 year should be able to. Because of Rett she now has epilepsy, respiratory issues, sleep issues and involuntary movements which present themselves similar to Parkinson’s . Life should not be this cruel or this difficult for anyone. One of the huge issues for Lysbeth and all people with Rett arise around communication. Now, if you research Rett syndrome much of the research will tell you that people with rett have severe intellectual disability! This is absolutely not true- Lysbeth demonstrated as a baby how much she knew- she began to talk, to bum shuffle, she could use her hands to feed herself and do typical  baby things like build towers, she knew her colours, her animals , body parts- all the usual skills a child of that age would know and could do. This knowledge didn’t just disappear, Rett came along and stole all of the tools in her box for Lysbeth to be able to demonstrate this knowledge- her voice, her hand use, her mobility.  More and more research is coming out now to show that people with rett do not have intellectual disabilities but they have communication difficulties. 

People with Rett are capably of communication! But how do you get a person who  is non-verbal and has little or no hand use to communicate? 

Rett uk know how. 

Over the years this wonderful charity have supported us on this amazing, long and often difficult communication journey with Lysbeth. She has developed a good yes and no- looking at us for yes- looking away for no. They have 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? It is worth it though, 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 moving to say the least . This moment was moving and wondrous. 

So you see Lysbeth doesn’t have an intellectual disability- she’s very much in there- but trapped by Rett. 

Rett uk have 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 brave and beautiful, with a passion for noise, laughter, family and chaos. And those that engage with her, know her, love her, are rewarded beyond their imagination. My little girl’s body is trapped by Rett and so this makes it even more crucial that I try somehow to give her a voice!! And Rett uk are at the forefront of helping us do this! 

Please donate if you can so that Rett UK can continue to help and support others with Rett Syndrome.”