A couple of years ago, through my TinyTalk Baby Signing classes, I met Olive and Tilda, beautiful twins living locally here in Nottingham. Tragically, just over a year ago Olive was diagnosed with Rett Syndrome; a cruel condition that affects only girls and robs them of any development they’ve made. Many lose any ability they had to walk, talk, play and feed themselves.
As a mum of 2 girls myself, Olive’s story has touched and moved me right from the beginning. I am totally in awe of her parents and what they must face on a daily basis. This is why I, and other local bloggers are writing about Olive to help raise awareness of Rett Syndrome, and the possibility that it could be the first curable brain condition.
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.
Olive is a gorgeous, beautiful girl who deserves that chance. Her mum, Janie writes her own blog about Olive’s Journey which is incredibly moving and inspirational. If my words haven’t convinced you of the ravages and devastation this condition causes then please take a look at Janie’s recent video.
If, like me you are moved by Olive’s story and you would like to do something to help here’s how:
- Tweet this post with the hashtag #olivesarmy and #reverserett to help raise awareness
- Donate on the Reverse Rett website – http://www.reverserett.org.uk/donate
- Share this post on Facebook or Google+ or simply tell your friends about this dreadful condition and its possible cure.
October is Rett Syndrome Awareness Month so we are doing all we can to help Olive and all the other beautiful girls with Rett Syndrome.
Thank you for taking the time to read this post. Other local bloggers supporting this cause are linked up below; let’s hope we can make a difference!