Sophie was born a very healthy, happy little girl. She had her first tonic-clonic seizure when she was 6 months old and it lasted 45 minutes. We were discharged from the hospital after a couple of days with a pamphlet about febrile convulsions and told that it was very common for children to have these convulsions up to age 5.
After the next couple of prolonged seizures we had an EEG and were told there was slowing in her brain and what they believed was seizure activity. And then the diagnosis - epilepsy.
The years ahead she battled through seizures, we visited many specialists, had many tests and tried various drugs, and were even involved in a trial of a new drug, but all were of no value and her seizures never slowed down. When Sophie was 3 years old we were told that we may get some seizure control if she had a small piece of her temporal lobe removed. We had no change in Sophie’s seizure patterns after surgery. The surgery resulted in us being told she had Dravet's Syndrome, a difficult epilepsy to control.
Sophie plodded along in her life; she was a very happy girl. She went to an early intervention kindergarten and then on to special school. Along our journey we have had mountains of support from family, friends and Sophie’s paediatrician. He is a great doctor and all in all a great friend. Nothing was ever sugar-coated. We always knew things were going to be hard for Sophie. I remember being in the hospital and my mum turned to him and said, 'This is a big one, John. I’m worried.' He turned to us and said, 'It won’t be the biggest one, I’m afraid!'
On our next visit we talked about SUDEP. I always knew that it could happen but the thought of my little girl dying from epilepsy was something I couldn’t imagine.
On Monday the 1st of June 2002, I put Sophie to bed as usual. She had her medication, we looked at a book and she listened to her favourite Wiggles song, Murray Had a Turtle! She stirred at 1.30am, which was nothing unusual, and I went to her and put her back to bed. She never woke up. Autopsy results say SUDEP.
Every night when I close my eyes all I see is my beautiful baby ... gone. She was 7 years old. It’s so important to get the SUDEP message out to everyone who has epilepsy in their life. It's heartbreaking to think about, but it’s necessary to talk about.
Global Conversation 2011