Today (28 April 2025), Alana’s daughter Hayley would have been 30 years old. Sadly, Hayley passed away due to Sudden Unexplained Death in Epilepsy (SUDEP) 10 years ago. 

Alana would like to mark this day by sharing what happened to Hayley to help raise awareness of SUDEP. You can read her story below.

If you have been affected by SUDEP, please phone our freephone Helpline on 0808 800 2200 or contact SUDEP Action at www.sudep.org.uk 

Can you tell us how your daughter Hayley was diagnosed with epilepsy?

I was called to Hayley’s primary school in Cardenden when she was in P5 as she was unwell, the other children had found her in the playground and said she was shaking.

After being taken to casualty and numerous tests later it was confirmed that she had epilepsy, and she was started on her first course of medication to try and stabilise the condition.

Looking back when Hayley was small i.e. a toddler, she would have what her dad and I called “scaries” where she would be staring into space and talking to people. We thought she was seeing ghosts of her Gran and Grandad.

She would also run around the room in a trance-like mode, we never put two and two together to think it could be epilepsy, so I believe she always had it, it was just dormant until the day in P5 when she had her first proper seizure.

I think part of me was relieved that she had a diagnosis as my dad has epilepsy and I knew his condition was managed and not life-threatening, little did I know what was to come years later.

I was scared for her as I knew having seizures could be life-changing and would likely have a significant impact on her.

At the time, the medical staff said a lot of young people grow out of epilepsy as they reach puberty, so I had that at the back of my mind that it might only be with her for a few years.

Can you tell us what happened to Hayley when she was just 20?

In the months preceding her death, she’d had a significant spike in her seizures, sometimes having five or six a day for no obvious reason.

She was attending the local college and studying her favourite subject of PE and had plans to begin a career possibly working in schools, as she had enjoyed that whilst doing her placements at a local primary school doing a gym class.

Her increase in seizures meant that she had to leave the college course as she had fallen during a “step” class and broken her front tooth. She was upset about this and took great pride in her appearance.

I remember writing a letter to our doctor just weeks before she died explaining that I was worried that something bad was going to happen and that I was going to come home one day and find her at the bottom of the stairs. I also said I knew she was an adult and couldn’t stop her going out.

Night before Hayley’s passing

The night before she died, I was staying with my partner which was unusual for a Sunday night as normally I would be at home. We had been texting, and she said she was all good, so I stayed over.

The next morning, I drove past my house en route to work and thought about stopping in but didn’t as I remember thinking “She’ll be in bed, I don’t want to wake her up for no reason”.

I live to regret that decision every day of my life as I will never know if I could have saved her.

Later that morning as she wasn’t replying to my text messages, I was becoming increasingly worried and said to a co-worker I was going to pop home at lunchtime and check if she was okay.

I arrived home, opened the door, shouted her name, and got no reply, as I walked upstairs, I remember a feeling of such dread I can’t even explain.

Everything then kind of went into slow motion, as I opened her door I saw one of her feet sticking out from the bottom of the bed, and thinking she must have stubbed her toe as it was bruised/black looking.

I looked up and realised she wasn’t moving or breathing and started screaming her name over and over and actually couldn’t believe what was I seeing or what was happening.

I remember running around the room shouting oh my god oh my god this can’t be happening again (my ex-partner had died from an overdose in 2013, and I found him in similar circumstances).

Calling 999

I called 999 and can’t even remember much of what I said, something like my daughter is dead, she isn’t moving or breathing, she has epilepsy oh my god this isn’t real.

I then called her dad and just screamed down the phone “It’s Hayley she’s gone; you have to get here now”. Also, I made a similar call to my parents then called my partner and left a voicemail for him to come to Cardenden.

The rest of the day was the arrival of Hayley’s dad, my other daughter Abbie, my parents, my partner, and the ambulance crew. As soon as I looked at their faces I knew she was dead and there was nothing they could do, the Police arriving and making her room a crime scene and an officer was posted at the door.

Police took a statement from me, I know I went into fight or flight mode having been in the situation before, and I remember giving them all the facts they needed in a calm manner.

When the undertakers arrived, they said they would close the bedroom door as I was sitting upstairs in my bedroom. I very emphatically said no and that I wanted to see my daughter leave her house for the last time.

Before this, though I knew I wanted to cut off a little bit of her hair as a keepsake. The young police officer said I wasn’t allowed in the room to which I very strongly but politely said “Just try and stop me, my daughter has just died and I want a lock of her hair”

As a family, Bernie (my ex-husband), and our other daughter Abbie went into her room and said a joint goodbye and all kissed her on her forehead, it was a tragically beautiful moment for us to share and very surreal.

Coping with grief

The next few weeks were all about the post-mortem, funeral arrangements, lots of flowers, and people coming to the house in absolute shock at what had happened.

The strangest thing about death is that the person who is grieving suddenly has to become a host for all the callers, make tea, and in most circumstances keep the conversation going over and over again and, in some respects, try to make them feel better about what has just happened. All very surreal and scary.

I would say the one thing that kept me going was that I was absolutely determined to give a speech at her funeral, which I did and never in my life have I seen a congregation stand up and give a round of applause.

I was very proud of myself and said that I brought her into the world, and I was damned if I wasn’t going to be the last person to see her out of the world and say goodbye to her in the way I wanted.

After the funeral I crumbled for months, waves and waves of grief.

To this day I still have them, they come out of nowhere and hit you like a slap in the face. In the early years, I would run away on her birthday or the anniversary of her death, but I learned after a couple of years you can run away on holiday but you can’t escape your thoughts.

So now, if I am having a bad day(s) I just go with it and let it happen, in fact, only just recently I spent the entire day in tears as I knew it was coming up to Purple Day.

Do you feel there is more needed in terms of awareness regarding Sudden Unexplained Death In Epilepsy (SUDEP)?

Absolutely 100% there needs to be more awareness, I am a member of various epilepsy and SUDEP groups online and 10 years on nothing much appears to have changed.

I see stories from parents all around the world saying the same thing “They didn’t know about SUDEP”, and “we were never told about it”.

I have never understood why the health care professionals don’t mention it, with any other condition you would be given full facts so that you have all the information you need to try and manage the condition as best you can, alongside any meds you are taking.

For me, if I had known about SUDEP I might have taken extra steps in the house to look after her or reduce the risks.

Why did you decide to do the zipslide and fundraise for Epilepsy Scotland in memory of Hayley?

Hayley will be 30 this year on the 28th of April and it is 10 years on the 20th of July since she died.

I had already spoken with my daughter Abbie and Hayley’s dad Bernie about doing “something” this year given how special it was going to be.

I was scrolling on Facebook, and the Epilepsy Scotland post was there advertising the zipslide.

As soon as I saw it, I thought we were doing that as a family, contacted Abbie and Bernie and they both immediately agreed.

If we can live without Hayley, then zipping across the Clyde is nothing; we can raise money for Epilepsy Scotland and more importantly, bombard social media and hopefully get the press involved in promoting the risks of epilepsy and SUDEP.

You can find out more about SUDEP by clicking here.