July 2nd 1999 when I woke that morning it was such a beautiful day I had no idea of knowing that before the sun went down my life would be changed forever. My daughter Kristen had been diagnosed with epilepsy 10 years previously when she was nearly 15 years old, her epilepsy had been fairly well controlled with medication she had 1 or 2 seizures a year on average. This changed when she became pregnant her seizures became more frequent, she was told that this was nothing to be alarmed about as this often happened during pregnancy and that sometimes it had the opposite effect and in some expectant mums seizures disappeared. Not only did her seizures become more frequent but also they happened during sleep rather than during the day which was the norm. This gave me a sense of security at least she couldn’t injure herself or the baby while having a seizure in bed. I couldn’t have been more wrong.

On the morning of July 2nd Kristen got up to see Neil her partner off to work, she herself had worked until 10 p.m. the night before and she told Neil she was going back to bed. Neil was the last person to see her alive, when he returned from work that evening he found her dead in bed.

The news of her death was devastating; it was made worse by the fact that we were being told that there were no obvious signs of cause of death. In a situation like this, the death is treated with suspicion. The next time I saw my daughter was on a mortuary slab, they had bound her hair in a white sheet and a purple velvet cloth with gold fringes covered her. The first thing I saw when I entered the room was her heavily pregnant belly; Kristen was 8 months pregnant. We could not touch her because of the circumstances of her sudden death. All we could see of her was her tiny blackened face which I kissed on leaving, I withdrew quickly she was as cold as marble I didn’t expect it. The memory of this day will stay with me forever, I sincerely hope no mother has to witness such a sight.

It was 6 weeks later that we learned that Kristen had died from epilepsy, this made no sense to me at all she had had epilepsy for 10 years, how could she possibly just die? I did not know that having epilepsy could be fatal, doctors explained about the dangers of accidents from seizures and the possible risks of Status Epilepticus. Nobody warned me of the risks of SUDEP (Sudden Unexpected Death in Epilepsy).

Since her death, I have learnt a lot about epilepsy. Epilepsy is a very complex condition and most people are ignorant of the facts including medical professionals.

Epilepsy Bereaved threw me a lifeline when I was drowning in my grief. I am now an active volunteer and help befriend families affected by an epilepsy-related death.

I know that the work I do will never bring back my daughter and grandson but, until people with epilepsy are treated with equality and receive the same services as people with other chronic conditions, voluntary services like ours are vital.

Arthur Dandy