Gloria lost her son Russell aged 34 on 6th July 2005
Russell was 14 when he developed epilepsy after an accident. Although he saw many specialist epilepsy doctors, he never achieved seizure control. Neither Russell nor his family were ever told about minimising risk of SUDEP.
Many people did not understand Russell’s epilepsy and as a result he often felt isolated. He was also very afraid of the seizures. Although he tried to explain his fears he sometimes felt that he was being unheard.
At work Russell supported people with a visual impairment to use computers. He was a valued member of the team and always showed patience and understanding.
Russell had recently had his anti-epileptic drug regime changed and was just getting ready for work one morning, when he died. He died of SUDEP aged 34.
His mother Gloria said: “Russell’s sense of humour and understanding way are missed much more than words can ever say. But in his memory I would like to support Epilepsy Bereaved in their campaign for funding for research to prevent deaths from epilepsy and influence the practice of clinicians who treat people with epilepsy to always discuss minimising risk of SUDEP with their patients and their families.”
