'The term SUDEP just has to be better known'

My daughter Samantha died of SUDEP in July 2009, aged just 19, after being diagnosed with epilepsy in December 2008.

She was a caring and happy young lady and a wonderful daughter, sister and friend. Everyone loved her smile and enthusiasm for life. She loved swimming and socialising with her friends. She had swum with dolphins and tried scuba diving. Her ambition was to become a social worker.

We will never forget that fatal night when Samantha fell down the last few steps of our staircase whilst having a seizure. One minute she was fitting, the next minute everything just stopped. It was like a light bulb switching off.  There was just stillness and peace as I held her in my arms. The paramedics came quickly and tried for an hour to resuscitate her, to no avail. 

Everything pointed to head or internal injuries as the cause of death. But the post-mortem revealed that there was no head trauma or any sign of internal injuries that could have caused her death.

A couple of weeks after Samantha’s death I saw an article in our local newspaper about a fundraising event in memory of a person with epilepsy who died from SUDEP. At the end of the article was Epilepsy Bereaved’s support number and I called it (Epilepsy Bereaved is the former name of SUDEP Action).

Later we were told Samantha died from SUDEP.

Since Samantha’s death, I’ve found it comforting to meet others who have gone through what we are still going through. We have raised lots of funds for SUDEP Action and this has helped us keep her memory alive.  We know that Samantha would be so thrilled to know that there is hope for others and her death was not in vain.

We have received tremendous support from SUDEP Action, particularly Tracy, I don’t know where I would be without it.

When Sam died I had no idea you could die from epilepsy.

This SUDEP Action Day we need to raise awareness so everyone who has epilepsy understands what SUDEP is. The term SUDEP just has to be better known.

I understand SUDEP is scary – but doctors need to have those difficult conversations with people so they can minimise risks. It’s about information, communication and education.

If I can help one person by sharing my story it’s worth it.

Lynn