Story
After considerable time and various tests, a neighbouring little girl has been diagnosed with Rett Syndrome.
I am hoping to raise awareness of Rett Syndrome and in doing so help to raise money for Reverse Rett.
I have to admit that I am not a runner, am several stone over weight and frankly quite scared of the prospect of
tackling a 10k. I will do my best.
I should be most grateful for any donations.
Thank you.
Here is a little info about the cause...
It's hard to imagine as an able-bodied person what it would be like to lose the ability to walk, or even stand and sit unsupported.Look at your hands. Imagine that almost overnight, they are rendered useless-no longer can you pick up, hold or carry anything, nor wave or clap or point.
Say something. Anything. Now imagine you can’t. No matter how happy, frustrated, angry, excited, or downright sick of something you are. No matter how many secrets you have to tell or bad dreams to exorcise. You cant speak, shout, whisper or sing.
Imagine all of it happening at once.
Something worse. Imagine it isn’t you that this is happening to but your child. Imagine that there is no treatment and that as well as losing these things, you are told that she will go on to develop problems with the simplest things, like eating, breathing and even moving at all. That you might lose her.
For thousands of girls and their families worldwide, this isn’t some horrible momentary imagining, This is their reality - the reality of Rett Syndrome.
Put yourself in their shoes. Follow them through their day. Watching everyone else’s children playing at the park. Spoon-feeding their twelve year old daughter for hours every day and just hoping that she can swallow. Lifting an 8-stone teenager in and out of a wheelchair when she should be climbing through the window at 2 a.m. Sitting by the hospital bed that lives in her bedroom, making decisions that no parent should ever have to make.
But this is not a hopeless situation. There is no treatment for Rett Syndrome but Rett Syndrome has been proven to be curable in the lab. Scientists are working today to make this a reality for our girls. Funding for this work comes largely from the blood, sweat and tears of families who want something better for their children and the people who see that and want to be part of something that will make such a difference to so many lives.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.