It is time to talk about SUDEP (Sudden Unexpected Death in Epilepsy)
This story is about our daughter Emily: beautiful, joyful and dearly loved.
Emily was born in 1989, the youngest of two. From a very young age, she was constantly busy with friends, family and her many activities. Occasionally there would be a crisis when she had too many choices, but any spaces she made became vacuums that she quickly filled with new activities. We became used to the constant talking and singing and piles of stuff left lying around as she moved on to the next thing. She knew how to win everyone over and made the most of the benefits of being the youngest.
When she was 15, she was diagnosed with juvenile myoclonic epilepsy. She faced it with her usual positive outlook, coming into the kitchen a couple of weeks after her diagnosis to inform us “I’m glad I have epilepsy. I was always afraid my life was too perfect and something would go wrong. Now it has and it’s okay. I can cope.” To a friend who got upset, she reassured her, “It’s okay. You don’t die from epilepsy. That’s cancer.”
In 2012, aged 22, she celebrated the end of her University exams with a night out with friends and the next morning she was dead. Her body was taken to the local hospital, her computer and phone taken to the police station for safe-keeping and her room sealed as a possible crime scene. We had to wait 3 weeks before we could hold her funeral and a year for the inquest with the verdict of SUDEP. The coroner apologised for the wait.
Here are just some of the things we have learnt from the gift of our daughter’s life and our grief following her death:
There is a lot of love in the world.
Life is precious and to be lived fully, but it’s also okay to retreat when you need to.
There are no certainties. Everything can change in an instant.
Grief, vulnerability and brokenness are not signs of weakness but of love and it is our love for our daughter that enables us to carry on without her.
Compassion is neither difficult nor complicated. It’s simply being there.
Not enough people know about SUDEP. It is important to share our stories with whoever will listen. It is time to talk about SUDEP.
To read Kate's full story, please visit our SUDEP Awareness Day campaign site: www.sudepawarenessday.org/press