Thanks for taking the time to visit my JustGiving page. 

I am a slightly overweight (cough) 54-year-old mother of 4 beautiful daughter, my youngest Georgina has Rett syndrome. 

On 30th August 2023, I along with other Rett parents will be undertaking a 3 day, 54km hike around an active volcano in Iceland to raise funds for Reverse Rett, sleeping in tents and goodness only knows what the toilets will be like, I have a serious love affair with my sofa and slippers, but the reality is I love Georgina more, so a bit of discomfort and blisters are nothing compared with her daily struggles living with this condition. 

At the time of Georgina's diagnosis in 2003 there was no hope of a cure or any medication to help with her symptoms. 

Now, thanks to the research funded in part by Reverse Rett Uk, there is hope on the horizon, as well as medication to help with her symptoms. 

The effect of Rett syndrome are many, lack of speech, lack of purposeful hand use, epilepsy, curvature of the spine, body tremors and poor muscle tone, some of those affected never walk or loose that ability during regression. 

In 2007, Dr Adrian Bird and his team reversed Rett syndrome in mice, switching on the functioning MECPs gene that causes Rett syndrome.

Suddenly there was hope for the mostly girls and women affected by Rett syndrome, currently there are trials taking place in other countries, the parents of girls with Rett syndrome in the UK are watching those trials with interest, so maybe one day Georgina and I can climb volcanoes together. 

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