Story
On the 11th May 2013 I will be partaking in a 60km walk across the South Downs which includes quite a few inclines! This by far will be the biggest challenge I have faced yet, especially as I haven't been doing anywhere near as much training as I should!
Most parents will tell you that they would do anything for their children and I've come to the conclusion that someone is determined to make sure I hold up on that statement! Many of you will know that I am a smoker, am not slim, far from fit and also have some problems with my hip/knee/ankle so this challenge will definitely be a test of my endurance!
However my daughter Caylin, who will be 6 years old 4 days before the challenge, cannot take a single step without someone moving her legs for her and in fact cannot even stand unaided due to her having Rett Syndrome so I will push on through every pain barrier for her.
As well as having no mobility, Caylin has little control over her hand movements, suffers frequently with reflux and constipation and as well as needing medication for these she needs medication to help her sleep. She cannot talk or use sign language or point to things she wants and she has to rely on us guessing - much like a young baby. However, unlike a baby who's needs are simple, Caylin understands the world around her a lot more and this results in her feeling very frustrated if we don't guess right.
I have devoted myself to raising money for Rett Syndrome Research Trust UK as they are the only charity in the UK that actively funds the vital research that will set Caylin free from her locked in body. Set up in 2010 by parents of children with Rett Syndrome, Rett Syndrome Research Trust UK not only fund research projects into finding treatments & ultimately a cure for Rett Syndrome and other MecP2 disorders, they are also very transparent about where the money donated goes. You can view their financial records on their website at http://www.reverserett.org.uk as well as find out more about Rett Syndrome, the charity itself and how you can help.
Thank you for taking the time to read my page and I am grateful for any donation you make, no matter how little/much.