Just six weeks before her 18th birthday, Hazel Cooper was found dead by her mother. Julie describes what it was like finding out that her daughter, Hazel, had died suddenly from epilepsy.
Losing a loved one to epilepsy is rare but can happen. Not all epilepsy deaths are avoidable, though some may be. If you would like to talk to a bereavement counsellor, you can call SUDEP Action on 01235 772852. Or to talk about concerns around epilepsy and premature mortality please call Epilepsy Society’s helpline on 01494 601 400.
‘It was the Monday after half term of year 13, and I went to check on Hazel because she hadn’t woken up and it was quite late’, said Julie.
‘I touched her and realised she’d gone. I yelled to my husband Jon “Hazel’s had a seizure” and we called an ambulance – we didn’t know what else to do.
‘That moment plays on your mind. I knew it was SUDEP, I’d read about it because I have epilepsy myself. Mine was always more severe than Hazel’s so I thought it would happen to me rather than her.
‘We had trouble when the police arrived because they found Hazel’s medication in her room. But of course it was in her room, she was weeks away from turning 18 and we’d taught her to tell us when she was running out of medication. This was a nearly-new box on her table.
‘The police wanted to talk to me and Jon separately. Because I have mobility problems, they took Jon to the police station for questioning while a police detective locked me in the police car. It was only when the ambulance driver told the police that I could have a stress-induced seizure that they let me out.
Hazel was born with kidney problems and had changed from having a paediatrician to an adult consultant when she was 16, but she only saw him once before she died. Her epilepsy was diagnosed after Julie found her having a seizure in the school toilets.
Hazel’s funeral was just for family with a memorial service afterwards for friends. Hazel went to a church and Sunday school and the ladies from the church provided a buffet for the service. ‘The community was so kind’, said Julie. ‘Hazel still has a few close friends who go and put flowers and Christmas trees and Easter eggs on her headstone.
‘Hazel was lovely, she was a nice person, and loved helping people. She did things with her church and liked looking after children.
‘I would often find her watching dvds with the neighbours’ children. They all loved her.
‘She really fought for what she wanted and had real grit and determination.
‘She wanted to be a paleontologist or an archaeologist because she had seen a programme about it, so she was studying science and health.
‘Hazel was sensible with her epilepsy, she didn’t go to discos even though she didn’t have photosensitive epilepsy.
Kim, Hazel’s younger sister used to share a room with her, but was staying away when Hazel died. ‘She came back when we told her about Hazel’s death’, recalled Julie. ‘It affected her a lot. She never went back to college and we didn’t force her to. She really was struggling, and then a neighbour invited her to come and move to Canada to help look after their children. So she did.’
Hazel’s death also impacted her brothers Jake and Zak.
‘Jake was only 10 at the time Hazel died, and he’s now 18. He finds it strange that he’s now older than Hazel was.
‘Zak was 13 when Hazel died. He had a couple of weeks off school, and he surprised us by getting a tattoo of a Celtic cross and Hazel’s name in her memory.
‘Jon and I have been strong for each other’, said Julie. ‘Losing a child can drive a family apart so we’ve kept it together. We look after each other.’