Mike was three days away from his 29th birthday when he died in January 2008. His Mum had phoned him earlier in the evening to discuss plans for his birthday weekend, but he didn’t get the call. Mike was 22 when his epilepsy was diagnosed. He was the eldest of three brothers, and had always been fit and healthy, and full of energy. One day he had a seizure just after arriving at his work with an electrical contractor; he was attended to by a retired GP and sent to Accident & Emergency. Before he went there, his boss sacked him on the spot and told him not to return. Mike was still disorientated and had no idea what had happened to him, and he was given no explanation of what epilepsy was – he just felt as if he was being punished. This was the first of many negative responses to his condition. At his first hospital appointment the doctor (not a neurologist as recommended in the NICE guidelines) said that Mike himself had to choose whether to go on medication. The pros/cons/effects were not really explained to him, so it could not really have been an informed choice. SUDEP was not mentioned. The word ‘choice’ stuck with Mike, even though tests had indicated ‘primary generalised epilepsy’ and that he should take regular medication. His parents discussed the driving issue with Mike. If he were to drive again it was vital that he took medication. The driving ban was the biggest ‘deal’ in all this. Cars, driving and mechanics were all-important to Mike – as they are for many young people who grow up in villages. A car represented his freedom and independence; he had friends all over the place and also it was his hobby and one of the skills he took most pride in. He ‘blamed’ his family for enforcing the ban and would get angry if they tried to discuss any aspect of his life or health. He would come in late and go out early, busying himself to the point of exhaustion rather than confronting the epilepsy. Mike was gregarious; he had many groups of friends and enjoyed bringing people together; he was a great one for helping out with anything from boats to house building. He loved parties – his Bob Marley impression was legendary.… He was always on the move, and loved being outside – cycling and camping, both of which he had done from an early age with other young people – or in his Land-Rover, green-laning with friends in theirs. He was very good with children, and always found time to explain things in ways which they could understand. A year or so before his death Mike went to the surgery to tell his GP that he was coming off his medication as he’d been seizure-free. However, he was not advised either to see the neurologist or how he should go about withdrawing from the medication. John and Marion told Epilepsy Bereaved; “We still feel sad and guilty that we didn’t do more to prevent the ‘avoidable’ death of our son, and to protect him from this cruel condition which had come between us in so many ways in his last years. Mike was our child, but he was also an adult, leading his life in his own strong-willed way. For him, a firm and proactive approach, with respect for his difficulties, might have helped him. We were there for him, but certainly did too much tip-toeing around the issues. We could have done more on his behalf – asked more loudly for help and information – and a thousand if onlys, what ifs and whys fill our heads. With hindsight, we should have involved everyone we could – family, friends and a specialist nurse – in his support, so that he might have felt more at ease and better able to manage his condition. After Mike died, we found out from his friends that he felt the epilepsy to be a stigma and associated with mental illness; he just wanted to get on with his life. Mike had never himself witnessed a seizure; he would get up after each of his seizures and get on – things to do, people to see…. Even though his friends were concerned that he might hurt himself, he never realised the danger he was in – none of us were aware that he could die from SUDEP. Around Christmas 2007 Mike joined in family get-togethers and outings. He was still pushing himself hard, working at weekends on a friend’s house, but had settled into his new home and was managing to fit in most the things he wanted to do. His anger and frustration had subsided, and he had become calm and friendly and funny again. We were so hopeful for his future, but SUDEP claimed him. All of his family – and especially his two younger brothers Chris and Nick – have been devastated by the death of our lovely, lively, talented and kind son. Nothing can bring Michael back to us, or take away the pain of his loss, but if his story can help to raise awareness of some of the issues of ‘epilepsy in young people’, then it will have been worth the anguish of writing about it.