Robert [Bob] had his first convulsive seizure when he was 16 years old. Thankfully his epilepsy was soon under control with medication, having only had four seizures. The specialist had told his family that there was a 50% chance that Robert would be cured, but there was no mention of the possibility of SUDEP.
The first 6 months were very difficult – there was no support or counselling offered. For a teenager it was particularly hard to deal with and Robert withdrew from his social life. He gradually regained his confidence and then didn’t let his epilepsy prevent him from leading a full, normal life. He went to university to study physiotherapy and enjoyed every minute.
For three years Robert was seizure free. Shortly before Robert died his family became concerned that he didn’t seem well and he complained of tiredness. On the 1st January 2004 Robert had another seizure and 3 weeks later he was found dead in his student accommodation by his university friends.
The post mortem had already been carried out before Robert’s family even knew of his death, and this revealed no cause.
The family waited in limbo for five months for the inquest. Robert’s Mum Hilary said:
“The pathologist was very kind and he explained SUDEP to us, but there was no further information available or support offered as we left the inquest, trying to deal with this terrible shock. Thankfully I eventually found out about Epilepsy Bereaved and the instant support given was wonderful, and has been since. I really wish I had known about the existence of the charity at a much earlier stage.”
