Thanks for taking the time to visit our Team  JustGiving page. We have decided to get darn right dirty for Reverse Rett by joining one of the toughest challenges about Tough Mudder Scotland 2014. 

If your reading this you've decide to support us on the challenge and believe as we do that yes, its tough but we we can do it.  We are ready to face Everest head on and succeed!!!!!!!!!

Sophie's Story

Sophie Louise Spence born 22/ 2 /05 the the picture perfect baby girl born after a fantastic pregnancy and amazing birth she arrived into our world a health beautiful bundle of joy .I remember holding her in my arms for the first time in total adoration . She was a very chilled out calm baby but little did we know that Sophie was hiding this  secret of that one day would blow our world apart.

 girls and it is mostly girls and in some cases boys are born with this genetic condition affecting 1 in every 10,000 births but show no signs of the condition at birth.  

Sophie as a baby was a delight easy going bubbly baby and toddler . She gave the most fantastic smiles the most contagious laugh and the best cuddles !

We had noticed that by the time she was at the age between two and three the small changes she was learning words and forgetting them and then never saying them again . She became agitated and upset  , withdrawn extremly  distressed . I was watching the very changes before my very eyes . To begin with we were told that she had speech delay and not to worry , my gut instinct as Sophie's mum knew something was a miss . But nothing ever prepared Aan and I for the brutal blow after recieving blood tests back that day of being told my baby had this condition of Rett syndrome . 

It blew our world apart . Hopes and dreams for Sophie  flashed before me and taken away in those very few words .

Sophie  was able at the time to say few words like "mummy, daddy doggie car and also was able to sing some of the words to her favorite programme Bob the Builder. Sophie now has no spoken language. she gets very upset as she's trapped in a body that she carnt work properly she has no spoken words to communicate. she is able and mobile at the moment and I hope she maintains that as the majority of suffers with sclerosis of the spine . She has very poor hand function so the simple tasks as to play with toys she struggles with and needs contant support . Sophie  needs 24/7 care and support for her every need to help her understand the world she lives in to keep her safe and secure and will do for the rest of her life . 

The list of how Retts has affected Sophies life is endless and frightening  we dont know what the future holds for Sophie. I hold on to the hopes and dream that one day there will be a cure and to give back Sophie the life she deserves to live. Sophie is the most infectious person I know . she's got the most contagious laugh ,she can light up a room and her  eyes speak volumes  to me and just melt your heart .

 In 2007 Rett syndrome  was  reversed in mice in a lab in Edinburgh by a geneticist Dr Adrian bird. This and many other possibilities as given us real hope, genuine hope that one day there will be a cure .

Rett Syndrome Research Tust UK have that vision they are driven to help reach that  ultimate goal,they are the only uk based charity exclusivley openly and honestly  focus on speeding treatment for Rett Syndrome.  We need hope, but hope alone won't get us there we need funding .

If you would like to find out more about the work that Rett Syndrome Reaserch Trust Uk are involved in visit www.reverserett.org.uk

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