For SUDEP Action Day 2024, Natanya McGrath has shared this piece about the loss of her twin sister Natasha due to SUDEP….
Natasha was diagnosed with epilepsy at just 13 years old. I remember her first seizure like it was yesterday. We were having dinner when she got up to grab a glass of water & suddenly, she froze and started shaking. At first, we thought she was messing —until my Mam screamed for my Dad & she was rushed to the hospital. That night, she came home with an epilepsy diagnosis, and from that moment, her life was never the same.
She endured weekly unpredictable seizures that could strike any time, day or night. It was incredibly tough on her. Natasha went through multiple brain surgeries, surgeries that we and her medical team hope would be successful, but they weren’t. Her seizures continued, and she was prescribed more medications, each one with its own set of side effects that presented their own challenges and had significant impacts. Natasha lived with epilepsy for most of her life, managing to hold down a job for over 15 years until her condition worsened. Losing that job hit her hard, and we all noticed her decline from that point.
April 14th, 2022 is the day I'll never forget. It was the day I lost my twin sister, Natasha, to SUDEP. Our world was shattered. It was just three weeks before our 45th birthday.
The first time we learned about SUDEP was six months later when the coroner’s report stated it as her cause of death. I’m sharing Natasha’s story to raise awareness of SUDEP. Our family lived with epilepsy for over 30 years, yet we were never aware of SUDEP. This must change and I would encourage everyone living with epilepsy and their families to take a moment to please learn more.
I have so many countless memories of my incredible sister, but the one I hold dearest is our last conversation in the hospital. We (me and my daughter Emma who was Natasha's godchild) walked the corridors, talking about how we’d start training together once she got out. We laughed as she flexed her muscles, joking about who had the bigger biceps. I brought her flowers, but she handed them back, saying, "What am I supposed to do with these? Take them back."
We couldn’t stop laughing—she always spoke her mind with a brutal honesty that everyone who knew her loved. I had no idea that just two weeks later, she would be gone, and we’d never get to start that training session.
In Natasha’s honour and memory, our family and friends are taking on “The 45 For Epilepsy Challenge” – to raise as much awareness as we can of SUDEP and to seek funding to help support Epilepsy Ireland with this important work.
I hope Natasha’s story will help others understand the importance of learning about SUDEP and the risks that come with epilepsy. Thank you for reading.
We would like to thank the Natanya for taking the time to share her experience about the devastating loss of Natasha as part of our public awareness for SUDEP Action Day 2024. To learn more about SUDEP, visit the ‘SUDEP’ page on our website.
Natasha Adderley - Ar dheis Dé go raibh a hanam
To support the 45k For Epilepsy Challenge in memory of Natasha, visit their iDonate fundraising page via the button below:
Support the 45 in memory of Natasha