I have been looking after a little girl for the past 4 years who has this condition. I have also met a few other young ladies who have cockayne syndrome, these children have such a short life expectancy and I want to raise as much money as I can to help find a cure but mainly to give these amazing young people some fond memories in what sort time they are with us!
I have done a skydive and a number of 5/10k's for this wonderful organisation and on the 29th of March I will be taking part in the Liverpool half marathon. xxxx
