Epilepsy sufferer Amy-Jane Foster, 45, has no memory of giving birth to her son Joe or the first two years of his life. She miscarried twice before Joe was born at seven months. 'I can’t remember my labour, finding out if I’d had a son or daughter, that first kiss, cuddle and touch,' she says. Joe is now 15, but his mother cannot recall feeding him, changing nappies, or settling him. 'The first 24 months of his life are just a blur.'
A Daily Reality for Many
Amy-Jane, from Fordingbridge, Hampshire, suffers severe tonic-clonic seizures lasting up to three minutes, causing her to lose consciousness. She experiences guilt over not being a 'good enough mum' due to the lost memories. Epilepsy affects roughly one in 100 people in the UK, according to NHS data and charities. While not everyone experiences memory loss on this scale, for Amy-Jane it is a daily reality.
Her first seizure occurred at age 11. She has been on strong medication and undergone two brain operations to control twice-weekly episodes. After marrying David, now 66, she became pregnant in 2008 but miscarried at eight weeks, and again a year later at three months. 'Thanks to the doctors changing my medication, I carried Joe to seven months then went into labour,' she says. 'I vaguely recall going into hospital with my mum at my side, my waters breaking and a couple of flashes of labour and then the only speck of memory I have is seeing our son being kissed and held by David.'
Family Support and Ongoing Challenges
Her mother Susan Hurst, 69, father Steve, 70, and sister Sophie helped raise Joe during his early years. 'Joe and I are very close but I sometimes feel I am his best friend, not his mum,' says Amy-Jane. 'He tells me everything but I do feel cheated and hurt, as I feel I have not been the best mum I could be.' Today, she can rarely be left alone, is unable to work, and the family lives with her parents. 'I have been through so much due to epilepsy and to cheat me of such precious memories is cruel but I am grateful I have my son and loving family around me,' she adds.
Another Story: Wedding Day Lost
Bob Sutcliffe, 55, has been married to Jan for 26 years but cannot remember his wedding day or honeymoon in Mauritius. 'There are moments in my life that I should be able to hold on to forever, but I can’t,' says Bob, who also has epilepsy. 'I cannot remember seeing Jan walk up the aisle, making our vows, the church service, the speeches or the reception afterwards.' He also cannot recall his graduation from Sheffield University in 1993. Bob was 36 when he had his first seizure during a work meeting; a second seizure a week later confirmed juvenile myoclonic epilepsy. Stress, tiredness, and overheating trigger seizures. Unable to work, he found a specialist in 2010 to manage his condition with medication.
Supported by Jan, Bob decided to become a primary school teacher despite being told he would never work again. They mutually decided not to have children due to fear of dropping a baby during a seizure. 'It was a mutual decision but one that saddens us to this day,' says Bob. Jan, a teacher, found Christmases hard, crying over having no child to share it with. It has been nine years since Bob's last seizure, but he thinks about the condition daily. He now paints greetings cards for Epilepsy Action and founded The Creative Health Trust UK, raising over £1 million for hospices.
Campaign and Support
Jon Eaton, director of communications and digital engagement for Epilepsy Action, says: 'Every year, we hear from thousands of people suddenly isolated by a condition that can rob them of consciousness at a moment’s notice. Alone, they struggle to regain control, while missing the key memories that make them who they are. We help people who can no longer recognise the lives they are living to get back to living well. The public can help by filling in the blanks and talking to people with epilepsy in your lives, showing understanding, compassion and support.' People can find support at epilepsy.org.uk or call the Epilepsy Action helpline on 0808 800 5050.
