When we started this charity, it was built upon the determination and grit of a group of parents who had seen the devastating effects of this horrible condition up close. We have nearly a decade of history together, working extremely hard to do anything and everything we can to bring a cure for Rett syndrome closer. We’ve achieved a great deal together, over £6m in research funding, but we know we can do more and will continue to push until Rett Syndrome is a thing of the past.
My daughter did not begin to lose her mobility until she was in her teens. I had days when I felt like lying down and never getting back up again. One day I realised that the only way things are going to significantly improve for Amber and everyone else with Rett Syndrome, is when there is treatment which can stop the debilitating symptoms of this cruel disorder and a cure which can restore lost abilities. My next question was, what can I do to speed things along?