SUDEP Action

Making every epilepsy death count
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‘Being involved with the charity has given us a focus’

Ann and Joe Aindow lost their 30 year old son Damien in 1999 and have been involved with the charity ever since.
Rosie Cooper MP meets Joe and Ann Aindow

What inspired you to get involved with the charity by campaigning and becoming a volunteer ambassador?

‘When Damien died we had nowhere to go apart from family. The coroner gave us the number for the charity and we went to the first meeting. We got such a good vibe from like minded people. We felt the cause was necessary to help prevent others going through what we had been through. We are pleased all the hard work has not been in vain.’

What have you got from the experience of getting involved

‘Being involved with the charity has given us a focus, as when Damien died it left a big void. We got great comfort from going to meetings. Weekends away with the charity are safe and you can take as much or as little as you want from them. Our MP was very receptive to us. We had a good hour with her and she just let us talk.’

“I told her our story and explained why we don’t want anyone else to experience the pain we went through, and she was very sympathetic and helpful. She wrote to Health Minister, Paul Burstow straight away and he said he’d be happy to meet a representative from the charity.”
Following on from that The Health Minister agreed to meet with SUDEP Action’s Director, Jane Hanna
Spreading the word.

The Aindows, from Skelmersdale, West Lancs, agreed to become volunteer ambassadors soon after the programme was announced in 2011. The aim is for ambassadors to raise awareness of the charity with MPs, ministers and in their local area.

As part of their mission, the retired former local authority workers have also managed to get their local coroner to agree to pass on SUDEP Action leaflets to other families bereaved by epilepsy.

Dr James Adeley, coroner for Preston and West Lancashire, thanked the couple for telling him about the charity, adding: “I will do what I can to ensure that bereaved families are made aware of your important resource.”

Ann, aged 66, said: “When Damian died, we weren’t aware of the charity, but the coroner at the time wrote to me and gave me the helpline number. So we agreed that as long as we can be of use to the charity, we will help in any way we can.”