I knew nothing about Rett Syndrome before Jen a fellow Nottingham blogger mentioned it, she knew Olive and her twin sister Tilda from their local TinyTalk class.
Just over a year ago Olive was diagnosed with Rett Syndrome a cruel condition which means she has lost the ability to talk, walk, feed herself, and play with her sister. As the mother of a little girl myself I simply cannot imagine how it must feel to watch your daughter suffer in this way.
Rett Syndrome is a debilitating disorder which most often strikes previously healthy little girls just after they have learned to walk and say a few words and begins to drag their development backwards.
Parents who discover that their daughters have this condition have no real treatment options. They are impotent in the face of this disease, as their little girl begins to fall, as her spine bends, as her body is racked with violent seizures.
In 2007 Rett Syndrome was reversed in mice in a lab setting. It is now positioned to be the first brain condition that could be reversed paving the way for treatments and cures for other conditions such as Autism and Alzheimers. It is felt that treatments to help Rett symptoms are close, and that a cure will follow.
Reverse Rett UK is a charity set up to raise awareness and funds to work towards treatments and a cure and has raised over $1million in the last 2 years.
If you do one thing today I urge you to watch this video, it is truly heart breaking to watch and I have sobbed every time. But with a cure possible and one that could pave the way for further cures then it is a cause worth supporting.
To find out more about Olive, her family and their journey then you can find them at http://olivesrettjourney.blogspot.co.uk/
Thank you so much Ellie, for joining in and helping us to raise awareness for Olive xxx
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