Nik started having seizures two days before her seventh birthday. For eight years she went through twenty four medications, or combinations of medication, but nothing worked. At her poorest seizure control she had 200 tonic clonic and complex partial seizures per month.
Nik was a very calm young lady with a very dry sense of humour, even during the worst of her epilepsy. Her family was of the utmost importance to her, as was her dog Abbie. In 2006, after finding that brain surgery was not an option, Nik had a final drug change. It was like someone had turned the light back on ... her memory became sharper; she could follow simple instructions again. We flew out to the USA where she fulfilled a lifelong ambition to swim with dolphins.
Nik started to access life once more. She moved into her own bungalow five minutes from her family. I was her night-time support and her Personal Assistant came in during the day to join her at the gym, swimming, karaoke, whatever she wanted to do.
Nik went to bed at midnight on the 20th of March, 2013. She shouted through to tell me she had switched her bed alarm on and was doing a word search before going to sleep. On the 21st, at 8am, her alarm clock went off. She didn't switch it off.
Nik was 23 when she passed from SUDEP. I knew she was at risk; hence she had an anti-suffocation pillow and bed alarm. Her seizure alarm was not triggered and no noise was made. I believe Nik fell asleep ... her lights went out.
She was an amazingly brave young lady. We try not to mourn her death but to celebrate her life. She leaves a big Nikey-shaped hole in our lives that no one will ever fill.
Since Nik passed away, we have been raising awareness about SUDEP. It amazes me the amount of people who are not aware of SUDEP, and whose healthcare professionals, doctors, neurologists either don't mention it to them or say there is no risk. My own GP had never heard of it. She has now.
Global Conversation 2016