We want you to think about your family and how the world revolves around this "entity". We are all so busy, exhausted but enjoying life to the full. We have great friends we affectionally call "the Germans". They are the same as every other family, except their daughter Romi has Rett Syndrome. Mum keeps a daily blog. Have a look and when you enter Romi's world you will understand why we are running to raise money to reverse Rett. This is Romi's story: