Lilly-May was born a happy, healthy little girl . Shortly after her last immunisations at 4 months she had her first seizure, the doctors at the hospital said it was due to a temperature. It became a regular occurrence and each time she would end up in hospital, her seizures started lasting 2-3 hours, too long for such a little girl! In October 2009 she had some genetic tests done and on the 8th of April 2010 Lilly was finally diagnosed with Dravits Syndrome, a rare genetic disorder where she has extreme fits, static epilepticus. Lilly now is not allowed to fit for longer than half an hour and has to be intubated and transfered to Intensive Care in Manchester.