September’s Epilepsy Star Award has been awarded to Debbie Cockayne from Norfolk, for the unwavering support she has given her daughter, Holly, throughout her journey with epilepsy. Debbie not only supports her daughter with epilepsy, but also her own mum, Margaret. She was nominated by Holly, who says her mum is the reason she’s got through her epilepsy diagnosis. Holly tells their full story below:
“I had my first seizure in November 2023, when I was 22. It was during a driving lesson which was very scary, but my driving instructor dealt with it so well and stayed with me in the hospital. My mum drove five hours north to come see me.
“After I had a second seizure, I received my epilepsy diagnosis in May 2024. This was two weeks after a break-up, so not great timing! Luckily, I was at home at the time, so my mum was able to support me. She reached out to my local neurology/epilepsy team who went through the diagnosis with me.
“My mum has continuously supported me through my epilepsy diagnosis and has comforted me through this massive change in my life. She constantly reassures me and has helped wipe away many tears.
“She’s been there for me when I’ve had seizures, and knew exactly what to do. She made sure I was safe and reassured me as I came round. Whenever I get down about things, she’s always there to cheer me up.
“It’s not just me she’s supported – she’s also been there for my grandma throughout her epilepsy journey. My grandma, Margaret, has had epilepsy for 50 years, and my mum does exactly what she does for me – she helps her with neurologist appointments and ensures she’s taking her medication. My grandma lives on her own, but my mum has put in place lots of measures in case she has a seizure.
“As well as looking after us both, she is an incredible advocate for people with epilepsy. She is constantly advocating for greater awareness about epilepsy and seizure first-aid. She shares what she has learned with colleagues, friends and other families.
“She’s put up posters in the office about supporting people with seizures and she frequently shares Epilepsy Action information posts on her social media.
“She’s also joined in fundraising for Epilepsy Action. This year, she ran the Great North Run alongside me – I am so proud of her for taking it on.
“I might be biased living in the north-east, but I think the Great North Run is easily one of the best races to do! Everyone is so friendly and people are cheering you on the whole way.
“I managed to get a PB and my mum absolutely smashed it as well! I was so proud of her for finishing – I always knew she would even when she doubted herself.
“We raised about £750 for Epilepsy Action together, and it was lovely to see the team at the charity tent at the end. I think me and mum were both revived by the cup of tea we got at the end!”
Holly continued: “We’ve used lots of Epilepsy Action services over the years. The pages relating to young people with epilepsy were really assuring to me when I was first diagnosed, and made me feel less alone in my experience.
“I still use the information pages a lot – they’re so helpful. I used the travel pages a lot when I was planning my first trips away with epilepsy. It gave me guidance on things like travel insurance, how much medication to pack and how to set up emergency contacts. All the guidance gave me, and my mum, peace of mind that even if the worst happened and I had a seizure whilst away, that everything would be okay.
“My mum’s currently planning a local pub quiz, relating to the brain, to raise funds. I’m taking on an 100km trail ultramarathon in the Lake District, in June 2026. My mum’s decided a half-marathon is far enough for her, so I’ll be taking on this race with my brother and his friend. We’re fundraising for Epilepsy Action of course!
“My mum is the sort of person who will always just keep going. No matter what happens she remains determined and positive. She’s been through a lot and still remains the most loving, caring, and selfless person I’ve met. She’s the strongest woman I know, my biggest inspiration, and my best friend.
“Mum, I could never thank you enough for everything you’ve done and continue to do for me. I don’t think I could’ve gotten through everything we’ve been through the past few years without you – I love you times infinity.”
Upon accepting her award, Debbie said: “I’m totally overwhelmed that Holly has nominated me. I’m just doing my job as a mum and a daughter to try and make their lives as easy as I can.
“Raising awareness is something that everyone can do to reduce the stigma for anyone suffering with epilepsy. Epilepsy Action has been a great support line for me for many years and I am still an avid reader of the newsletter and since Holly was diagnosed it has been an invaluable resource where we could find reliable information on everything from treatment options to travel insurance (for Holly’s global adventures). Thank you for all of your great work and thank you for featuring our story.”
Rebekah Smith, chief executive at Epilepsy Action said: “We’re so pleased to give this month’s Star Award to Debbie, who is an amazing fundraiser, epilepsy advocate, and support system to her loved ones with epilepsy. It’s lovely to see people with epilepsy who are living with such incredible support, and we want to make sure this is recognised.
“It’s clear that Debbie goes the extra mile, not only supporting her daughter and mum, but also advocating for greater awareness of epilepsy and seizure first-aid. Debbie’s determination to educate others about epilepsy is truly inspiring.
“Epilepsy Action has just launched a brand new national campaign, Could I Count on You?, which aims to educate and inform the public about epilepsy and what to do if someone was to have a seizure around them. Debbie is an amazing example of an epilepsy ally, and we hope others are inspired take a look at our campaign and take a minute to learn about epilepsy.”
