Scarlett’s story

This month’s Epilepsy Star award is awarded to Scarlett Mcdonagh from North London, who has spent the majority of her life advocating for people with epilepsy.

When Scarlett first developed epilepsy aged four, she was having between 120-150 seizures a day. Her mum was told she wouldn’t make it past six. However Scarlett, now twenty-three, has defied expectations time and time again. Despite facing huge life challenges including having nine brain surgeries, losing her mum to cancer, and battling her epilepsy, Scarlett has become a passionate advocate for people with epilepsy and is dedicated to raising awareness of the condition.

Scarlett was nominated for an Epilepsy Star award by her close friend Amber. Amber and Scarlett met at sixteen, in the bustling corridors of college, and have remained good friends ever since. Amber says Scarlett is a ‘true champion’ and tells her story below.

“Scarlett and I are like two sides of a coin. I am loud and outspoken, while Scarlett was initially quiet and shy. I love jerk chicken, rice, and peas, while Scarlett adores a good fry-up or roast dinner. Although we may differ, our bond is as strong as ever. Scarlett is a sister for life, and I am grateful for every moment we have shared.

“Since developing epilepsy at a young age, Scarlett’s life has been a series of hospital visits and medical procedures. However, she has defied odds and I am in awe of the person she has become, in spite of everything.

“One of the most memorable moments was when Scarlett had a seizure in her bedroom. As she came out of it, we both started singing ‘Under the Sea’. This comedic, funny, and hilarious relationship we have built together has only strengthened out bond.

“Alongside living with epilepsy, Scarlett’s strength was further tested when her mother was diagnosed with stage 4 cancer. Scarlett had to become her mum’s full time carer, all while managing her own health challenges, including the removal of part of her brain, and limited use of her left hand. With the support of her godmother, Scarlett found the courage to look after her mum , whilst also working at a pub and maintaining her fitness routine at the gym.

“One particularly challenging moment for Scarlett was when her mum fell off the bed, whilst Scarlett was picking up a delivery from Uber Eats. Without hesitation, Scarlett and the delivery driver worked together to get her mum back into bed. Tragically, her mum passed away just nine months later. Scarlett was now faced with navigating life on her own.

“Despite everything she’s been through, Scarlett has emerged as a passionate advocate for young people with epilepsy. I believe she is making a change in the epilepsy world. She is dedicated to raising awareness and supporting others; she shares her story at an Epilepsy Action support group in London, is a young champion for the charity Young

Epilepsy, and even helps an individual manage their emotional well-being which is affected by their epilepsy.

“I always told Scarlett that her epilepsy is her ‘superpower’, and after years of encouragement, she now proudly embraces it. This award is a recognition of her incredible journey and the positive impact she has had on those around her.

“Scarlett has made a profound difference in my life by helping me understand her condition better and being a wonderful friend. What inspires me the most about Scarlett, is her courage, resilience, and unwavering support for young people make her truly deserving of this award. Despite not yet having a social media presence, she is now eager to spread awareness online through Instagram.

“Thank you for being a beacon of hope – I am so happy that I get to call you my friend.”

Throughout everything, Scarlett has remained positive and is a role model for many, including her good friend Amber. She says it is an honour to accept the award:

“I’m honoured to accept this month’s Star award. I’m a huge advocate for epilepsy awareness – I think it’s super important that people know what to do if they come across someone having a seizure. I love attending Epilepsy Action’s support group in London. I really enjoy hearing and sharing our stories and experiences – it’s nice to speak to people who can actually understand what you’re talking about.

“I’m currently doing really well in life – I’m living life in ways that I never thought I’d be able to. Having been told that I wouldn’t make it far in life due to my health, I live life to the fullest.

“When I was younger, I relied on others to keep me safe if I was to have a seizure. Because of all the procedures I’ve had over the years, this is no longer needed. Since having a Vagus Nerve Stimulator (VNS) fitted, my independence has increased significantly and my quality of life has improved greatly. I now have four to seven seizures a night, but rarely have any in the day.

“I’m able to do things I love such as going to the gym. It feels like a safe place for me where I can go to clear my head and have some ‘me time’. I love doing things for myself, it’s really important. I go and get my nails done every month – it makes me feel fresh and it’s also where my mum and I would go before she passed away so it’s comforting.

“Finally, I want to give my good friend Amber a massive thank you for nominating me for such a special award.”