Louisa Stanley has never lost a child, but seven years ago, that's what it felt like had happened – and it caused her to go through desperate feelings of anger, blame and self-reflection. Being told her three-year-old daughter Anna was not going to walk or talk stunned and confused Louisa. Anna, now ten, was diagnosed as having Pitt-Hopkins syndrome, a very rare genetic chromosome condition which affects only about four in a million people and severely restricts their development