SUDEP Action

Making every epilepsy death count
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Stories

Disclaimer

SUDEP Action have permission from the families involved in all the stories on our website. Please do not reproduce any of these images or stories from our site, without our expressed permission.

Alan Davies
I have (had) two sons, one born 1984, one in 1985. Read more
It was my birthday Weekend, and a lovely sunny day. Read more
Bea
Bea only ever had four seizures in the past. Read more
On a wet spring morning in May 2004, just three months short of her twelfth birthday, Becky became a victim of SUDEP. Read more
Beth, as she liked to be known, died from SUDEP on the 2nd of August, 2010, aged 17. Read more
Blair Morton
A 20-year letter for Blair Read more
Until the 7 October 2011 Charlie was a perfectly fit and healthy 10 year old boy. Four days later on the 11 October 2011, a week after his 10th birthday our gorgeous little boy died. Read more
Christopher Stephen Gillies
Christopher Stephen GilliesDecember 4, 1985 - December 28, 2015 Read more
In 1991, Colette began to suffer from seizures. Given Dianne’s death, we were terrified that we could lose her. Read more
Our sister Dianne suffered from severe epilepsy for most of her life. Her seizures were unpredictable, and never fully controlled by medication. Read more
Drew
Our Drew. How do I describe our Drew? Read more
Elizabeth
Elizabeth appreciated the wonders of life such as nature, had high Read more
Our younger daughter Emily was beautiful, joyful and very much loved. And now she is dead. Read more
My daughter Emily was a bright, pretty, sporty, funny, popular and mischievous girl. I always thought she’d cause me trouble but I never imagined this. Read more
Ethan
Ethan was born normal and healthy. Read more
Eve, the youngest of our two daughters, died aged 21 in 2005 whilst studying Radio & TV Production at Staffordshire University. Read more
Hannah - My Story
My daughter, Hannah Louise was born 26th May 1992.  She weighed ju Read more
Hope
Hope was born on the 15th March 2005. Read more
Jack was an only child. He died on 23 December 2010, aged 20. He was full of life, well-liked by his peers and he had a great sense of humour. Read more
Jenny
Our dear sweet Jenny, affectionately known as Jenny Wren.  Jenny wa Read more
Jon was larger than life in every way; he loved people, loved life and always looked for the good in everyone. Read more
Karen was born in April 1975 and died in February 2012. Read more
Everyone who knew Kathryn was captivated by her personality, intelligence, charm and beauty. She was loved by everyone; a treasured daughter, sister, granddaughter, auntie and friend. She was on loan from the angels and they wanted her back. Read more
Katie was a 20 year-old trainee nurse at UWE and had been having two seizures a year on average since the age of 16. Both she and her family thought her epilepsy was well under control with medication. Read more
Kim was a beautiful and caring girl, with a great sense of humour. Read more
Matt
Matt was the most kind, caring, funny, thoughtful, wonderful person Read more
In October 2015, my daughter Natalie died at the age of 31, leaving our two grandchildren aged 2 Read more
Nik started having seizures two days before her seventh birthday. Read more
On the 12th February 2011, at approximately 6:00pm, our brother Ravin J Dattani sadly passed away. He was 29 years old. Read more
Rebecca Hayward
My SUDEP Story Read more
On the Tuesday 30th June 2015, my life changed forever, when at 7.30 a.m. Read more
When my younger sister Rowena was 6 years old she was diagnosed with Nocturnal Epilepsy. Read more
October 2, 2007 we awoke to find that our two and a half year old son, Rylee, had passed away in the middle of the night. Read more
Samantha
Samantha died on The 4th December 2004. Read more
Sean Slootweg
This was written on the date Seán was born – but 10 years after he was taken from us. Read more
My whole world changed with one phone call in August 2010. My eldest son, Stephen, had died suddenly. The sheer disbelief, shock and bewilderment was powerfully overwhelming. Read more
Tim
“10 Seconds on a Zebra" Read more
People do not die from epilepsy. That is what we were told when William died as a result of a seizure in 1988. Read more