Every night, just before Caitlyn Maloney is about to fall asleep, she and her fiancé Michael Robertson share a kiss and say they love each other. With their two young boys Isaac, three and one-year-old Louis tucked up safely in their beds, it’s a scene that will be played out in many young families.
But for Caitlyn, that loving kiss goodnight takes on extra special meaning. As someone who has lived with epilepsy since childhood - and experiences at least 15 seizures a day - the thought that she might not wake up next morning is always present.
"I don’t want to be too morbid but I could die from a seizure in the night which is why it’s so important to me to say ‘I love you’," says the 21-year-old student from Bury, Lancs.
"When we got engaged, I told Michael that I wanted to do it sooner rather than later because if the worst comes to the worst, at least I can die knowing that I’ve married the love of my life."
Epilepsy is one of the most common serious neurological conditions in the world and affects around 600,000 people in the UK. This means that almost one in 100 people in the UK suffer from it and around 87 people are diagnosed with epilepsy in the UK every day.
Twenty-year-old Michael, an assistant manager at a supermarket has certainly been Caitlyn’s ‘rock’ over the last four years. So much so, that charity Epilepsy Action recently gave him a Helping Hands award for his devotion to his partner.
"My epilepsy has become more severe with time and I’ve often been very close to death but Michael has always been there for me," says Caitlyn.
"I have tonic clonic seizures (where she loses consciousness and has a ‘fit’) every day and at least 15 daily absence seizures (where she can ‘drift off’ for a few seconds at a time). I’ve started having a new type of seizure where I’m awake and jerking which lasts for about 20 minutes and I don’t breathe for the majority of the time. I have these every other day.
"We got together when Michael was only 16 and I was very open about my epilepsy from day one. In fact, in the early days of our relationship, when I’d just had a seizure at college, one of the teachers asked if I needed help and I couldn’t think of anyone’s names. I scrolled down my phone, saw the name Michael with a heart next to it but had no idea who he was. But we phoned him and he came straight to the classroom and looked after me. My epilepsy scared him but he dealt with it so well."
Since then, Michael has been by his fiance’s side as much as possible, to help in case of a seizure.
"He’s caught me falling down escalators, he’s stopped me falling on my stomach when I was heavily pregnant, and he’s always listening out for me. Even when I go a little bit quiet in another room he’ll call: ‘Are you ok?’ If I’m having a seizure, he’ll make sure the boys are ok and looks after them too. One of the things I feel worst about is one time when I had a seizure when I was on my own with the boys and little Isaac burnt himself. I felt so guilty. So now I’m never on my own. Michael will always wait until I’m asleep before I go to sleep, just to check that I’m still breathing."
Caitlyn, who has recently been referred to a specialist epilepsy unit for help with her condition, nominated Michael for his award and was thrilled when he won.
"These new seizures means Michael is even more terrified about me dying, but he carries on protecting me," she says. "He always helps me during the seizure whether it’s catching me, putting me in the recovery position, or changing my clothes if I’ve urinated. He also helps me with the mental health side. There have been times when I’ve been crying all night and he has comforted me, even if he has work at 5am. I will never be able to get across how much Michael has helped me because he truly makes me speechless.
Michael says it was a massive shock to receive the award but he was very grateful. "As Caitlyn’s fiancé, I accept her for who she is and her epilepsy is part of her," he says. "It is upsetting, but we get through it as a family with our two boys also helping as much as they can at their age. I’m just very thankful for the award."
For more info visit epilepsy.org.uk