Hayley McGurk was diagnosed with epilepsy when she was just nine years old after having her first seizure in primary school.
Now her mother, Alana Anderson wants to help raise awareness of SUDEP.
Alana said: “Hayley was officially diagnosed when she was in primary 5.
“Looking back, she always had signs ever since she was a toddler. She would have night terrors or some days she would run around the living room. Looking back now, we realise that those are probably indicators that something wasn’t quite right.
“But we didn’t know. It was only when she had her first seizure in primary school, in the playground, that’s when she was diagnosed in the coming days/weeks.
“Not long before she passed away. She was going through quite a stressful situation. She had her first boyfriend that was brilliant, they had been together for a couple of years.
“Probably four months before she died, her boyfriend suddenly split up with her. That was a huge thing for her because he was her first proper boyfriend.
“She did go on a downward spiral and her seizures did spike quite a bit at that time. In the months before she passed away, I met with her doctor and said that I am really worried because of the stress she is under.
“Her seizures did spike quite significantly. I think that was down to the stress. I didn’t blame her boyfriend at all. They were just young people.
“Despite these small signs there was no indication that she was going to pass away in her sleep.
“We didn’t know anything about SUDEP. It had never been mentioned.”
After the initial shock of Hayley passing, Alana and her ex-husband relied on their close circle of friends.
Alana saw a psychologist and a counsellor for around three years, which helped her cope with Hayley’s passing and was eager to try to make a difference.
Alana said: “We decided to start doing some walks and raise money. For two to three years we did different activities to raise money for Epilepsy Scotland.
“My ex-husband Bernie did a lot of fundraising as well for SUDEP Action.
“I got to a point with the fundraising where there is only so many times you can ask people for money. When you have the same circle of friends.
“I stepped back from it for a few years but have always done walking and in the walking group we have always done the Kiltwalks.
“When we did the Edinburgh one last year, at the end, they have the PR and notices up on the big TV showing the dates for this year and the date for the Glasgow Kiltwalk was the same as Hayley’s birthday. It flashed up on the screen 28 April 2019 and I thought wow that’s a sign, I must do that walk.
“So, I made that commitment to do the four walks. During the first walk I thought I had to do something different because you can keep on raising money but maybe not see a difference personally.
“I am quite sure the money we raise over the years, Epilepsy Scotland are making good use of it.
“But for me, personally, I am not getting that direct result. That’s when I tried to make use of social media and get my message out there. It was about having a direct impact and try to raise direct awareness and target certain people.”
Awareness of SUDEP
Alana believes that there is not enough awareness of SUDEP and would like changes being made to how patients are advised in consultant rooms.
She said: “It was never ever mentioned to us in any of the appointments with the nurse or the consultant.
“I don’t recall them saying anything that raised alarm bells for us because if it had we would have done something, but we didn’t.
“Whatever they said, reassured us enough. Since Hayley passed, I am a member of the SUDEP Action Facebook Group.
“It is a very international group and that is the consistent message that you hear from people in America, Canada, New Zealand, Australia. They all say the same thing in some shape or form that we didn’t know.
“It’s not just a UK or Scotland thing. It seems to be a worldwide thing that people didn’t want to talk about it. Or didn’t want to mention it. I’m not quite sure why? I know they don’t want to scare people.
“However, if you or I had some other condition you would be told what the risks are. If you had a debilitating condition, you would be told, if you wanted to know. What stage you are at and this is how it is going to progress.
“But for some reason epilepsy is different. I find it really strange that they don’t talk about it.”
For more information about SUDEP, please read our SUDEP factsheet, which can be accessed at the following link: https://www.epilepsyscotland.org.uk/here-for-you/publications/safety-and-first-aid/.
If you been affected by anything in this article and would like to talk to someone, please call our freephone helpline on 0808 800 2200.