Caron Robinson’s life was ripped apart just over 12 months ago when she lost her beloved daughter, Nikey, to Sudden Unexpected Death in Epilepsy (SUDEP).
Caron was heartbroken to lose her daughter at the age of 23, but she has refused to let grief overwhelm her. Instead, she is devoting much of her spare time to supporting other bereaved parents and raising money for the residential college where Nikey studied.
‘I could easily curl up in a ball and just cry and, believe me, I often feel like that,’ says Caron. ‘Or I can do something positive to honour the memory of Nikey who always thought of others less fortunate than herself. I’ve chosen to do what Nikey would have wanted - to help other people.’
Caron’s life as a carer began just before her daughter’s seventh birthday when, out of the blue, Nikey had a seizure. A year and many tests later, Nikey was diagnosed with epilepsy.
Caron admits that Nikey’s epilepsy made an impact on the whole family (her dad, Peter, and sisters, Jaime and Ceri) but adds: ‘Nikey refused to let epilepsy dominate her life. She lived life to the best of her ability. She was a beautiful, generous and selfless soul who acted as an advocate for fellow students.’
Caron was Nikey’s carer and supporter. ‘I worked as a teaching assistant at Nikey’s primary school so I was on hand to look after her if needed. I learned how to care for her and to give her emergency medicine. At the worst time, between the ages of 13 and 16, Nikey was having 200 seizures a month.’
In her teens, Nikey went to a residential school for children with epilepsy and later to college. She was unable to get paid employment but did a lot of voluntary work and moved into a bungalow for more independence.
Even then, Caron slept at the bungalow to be on hand for night-time seizures. One night in March last year, Caron and Nikey spent the evening chatting. Nikey was happily talking about getting more voluntary work. They went to bed as normal and when Nikey’s alarm clock went off in the morning, Caron went into her room and found she had died in her sleep. ‘I take great comfort from the fact that she died peacefully and that she’d been so positive the night before,’ says Caron.
Since Nikey’s death, her family has held a series of fundraising events. They’ve already raised £12,000 for SUDEP. The proceeds of a ball in her memory will be used to sponsor an annual leavers’ ball at the college Nikey attended and enjoyed so much.
Caron still works as a teaching assistant, supporting children with autism. She and Peter also hope to be accepted as respite foster parents for severely disabled children.
‘I want people to know how inspiring Nikey was to everyone she met. The strength that she found to cope with her many problems has inspired me to face bereavement by trying to support others.’
- Caron has recently joined the Yours Bereavement group. National Epilepsy Week is May 18-24. Visit www.epilepsy.org.uk or call the helpline on 0808 800 5050 for information on Sudden Unexpected Death in Epilepsy (SUDEP) .