My son Robbie Gordon, who has died aged 37, due to uncontrolled seizure activity, had a unique personality, and distinctive strengths and abilities. Robbie had a very rare condition known as Dravet syndrome, with epilepsy, profound learning difficulties and autism. He experienced difficult times that would have floored many of us, but always came out smiling. His internal strength and robustness got him through the many tough days.
Robbie’s mother, Ruth (nee Melton), and I were both working in London, in a special school for children with severe learning disabilities, when Robbie, the elder of our two sons, was born. When he was two, we moved to Hastings, where our younger son, Greg, was born – he grew up with a sense of great love and protection for his brother. Robbie’s early years were incredibly difficult and Ruth gave up her career as a nursery nurse to care for him. There were no support groups that fitted Robbie, so Ruth and Robbie were always on the outside, and it was very isolating. Dravet syndrome was first recognised, by Dr Charlotte Dravet, only in 1998; Robbie had an ever rarer sub-group (of the SCN2A gene) and his diagnosis was not made until he was 30.
