Nikey’s Story

Not all epilepsy stories have happy endings. We send our condolences to Nikey’s friends and family and hope her story raises awareness of SUDEP

by Caron Robinson (Nikey’s mum)

Nikey started her epilepsy life, quite out of the blue, aged 7. It was very quickly apparent that her seizures were quite out of control and refractory… Aged 8, she started to have memory problems, therefore her education started to suffer.

I fought for and got 2 hours support for Nik in primary school, to support her 1-1 during games/swimming lessons in school.
The gap in her education compared to her peers became greater. It was obvious that at senior school she was going to struggle. I fought for and won 32 hours per week 1-1 support plus 1-1 taxi transport door to door, ready for the senior transition.

Nikey’s epilepsy continued to affect her quality of life in all areas. Her seizures (both tonic clonic and complex partials) still plagued her daytimes and nighttimes. Leaving her physically shattered and often sick. Her days were often spent laying on the sofa in recovery or seizing more…

Nikey attended senior school for 18 months during which time, I had made contact with her neurologist and found that there was an epilepsy centre in East Anglia. My next fight was born. Involving social services, education authority and medical. And eventually my PMs support.

Her place was secured at the centre. Including taxi transfer. Nikey was part of this process decision. She happily wanted to fit in with peers and get away from the bullies in mainstream school.

Residential education started aged 13. During this time, Nikey was having in excess of 200 seizures per month. She spent a great deal of time having emergency medication administered. Knocking her into oblivion and the numerous side effects of heavy drugs and postictal  seizure.

During times of seizure free days, Nikey’s personality would try to show itself, staff realised that there was more to Nikey than she was able to show.

Nikey tried and tested 24 medication changes or combination meds, nothing worked. The surgery option was mentioned, only to find out that both sides of her brain were involved deeming surgery a non starter.

So continuing with meds was our only hope. I was not up for delving into the DVT as little was known about its long term problems, and the Ketogenic diet was too harsh to subject Nikey to anymore guinea-pig trials.

Aged 16 and 8 years later, trileptal was offered, not holding out much hope of an improvement, I said, “What harm can it do…but….”

Niks education improved so much that she was offered a place at the epilepsy college, and after in the 24/7 learning centre, life skills, which she continued every weekend and school holidays when she came home.

Within 2 weeks Nik’s seizures were reduced to 11 per month, just in time for our USA holiday, where Nik would be supported, filmed and fulfill an ambition of swimming with dolphins at the dolphin research centre, not just once, but 5 sessions. I had decided to make a memory book in the lead up to the swim, but Nik remembered it all..wow..the lights had been switched back on.
For the last 7 years of Nik’s life, Nik lived her life to the fullest, and without limits.

She moved into her own home, with mine and the PAs that she interviewed herself as her support. She went back to college to fill in the gaps she knew she had, she did volunteer work, she joined a jewellery making college course, she designed and hand painted bags, she rode the biggest roller-coasters, she reversed bungee jumped, she carpet rode a 306 feet drop over a lake…she joined the gym,she shopped, she cooked, she sang and enjoyed karaoke nights, she was meeting new people. She told me she was remembering things at college that she had learnt before. She inspired the college to hold a leavers prom, which they now hold every year. She was very inspiring, kind, thoughtful and spoke out about her epilepsy…to anyone who would listen..(at 11 she spoke about herself and epilepsy to her whole school year) she was brave.

On the 20/3/13 Nikey went to bed, telling me she was going to ask for more volunteering hours at the SUE RYDER shop, as she was learning new skills and being given the opportunity to do more. (Nik was very able). She bought me a lovely garden ornament and made me smile as she always let me know how much she had spent, even though it was in the sale. We went to bed (I slept at Nik’s as her night time support…) funding for her 24/7 support was another fight!

I found Nikey sleeping on the 21/3/13 at 8.10 am, when her alarm clock kept on going. Nikey was in sleeping position, and indeed I had even gone into her room opening curtains and talking to her. It was only then that I realised something was wrong as Nik always responded to me. This time she didn’t. Despite CPR, I could not bring her back. She had been using her anti-suffocation pillow and her seizure bed alarm. No alarm had been triggered and I had been hearing her seizures for 17 years.
Her cause of death…SUDEP (Sudden Unexpected Death in Epilepsy) … rare, little spoken about … though I knew the risks and put potential risk reduction in place, as was used at college.

Since Nik’s death, I have been working hard to raise awareness to SUDEP and support SUDEP Action Charity in Nik’s memory…

We have raised/donated £17000 since our loss. Nik is remembered and loved very much by me; her dad, Pete; her sisters, Ceri and Jaimi; her nieces, Keira and Paige; and her nephew, Dean. Her 2 brother in laws Michael and Phil, were considered as siblings. She leaves a huge Nikey shaped hole in our lives that no one will fill.

It is estimated that 1 in 1,000 people with epilepsy will die each year (although exact numbers are difficult to track). To learn more about SUDEP and preventative measures, please visit the following links:

SUDEP Aware

SUDEP Action

Danny Did Foundation

SUDEP: Epilepsy Foundation

Canadian Epilepsy Alliance: SUDEP

 

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