Family’s tribute to brave Nikey

Nikey Robinson
Nikey Robinson

The grieving family of March woman Nikey Robinson have paid tribute to her after she died as a result of a rare complication linked to epilepsy.

Twenty-three-year-old Nikey stole the area’s hearts back in 2005 when the Citizen launched an appeal to help make her dream of swimming with dolphins come true. Fenland people rallied round staging a host of events and raised a staggering £6,000 to send Nikey and her proud family on the trip of a lifetime to Florida.

Brave Nikey’s life was blighted by epilepsy from the age of seven, but despite her constant struggle with the condition which at its worse meant she was suffering up to 200 fits a month, she was finally living the life she wanted.

But sadly it was cut short last week when Nikey died in her sleep at her own home in March on Thursday. The cause of her death was the rarely diagnosed SUDEP (Sudden Unexplained or Unexpected Death in Epilepsy).

Her family had to fight to allow Nikey the independence of having a home of her own, but she delighted in having her own home in Collingwood Avenue, where she had lived for the past two years with the support of personal assistants.

Nikey’s family are devastated by her death, particularly as her life had finally turned a corner and was on the up.

Her proud mum Caron, of Doddington, explained: “Nikey’s life was far from easy, in fact it would be fair to say it was quite traumatic. But things were finally going well for her. Her epilepsy was well under control and she was only suffering around 20 fits a month. She was enjoying three courses at the Community Education Centre and she was working as a volunteer at the Sue Ryder shop in town.

“She had started to go out more and was finally making friends, something she had lacked because of her condition. Nikey had completed a jewellery making course and she was making jewellery including Shambala bracelets and necklace sets to sell.

“She had also started creating personalised tote bags and was looking forward to taking her stock to a big Easter craft fair.”

Some of her jewellery is still on sale at Fossils Galore in March High Street, and all proceeds from items sold will go towards SUDEP Research.

Apart from her jewellery making Nikey also enjoyed karaoke and bingo, as well as spending time with her nephew and nieces, Dean, Keira and Paige.

“She loved to sing and really enjoyed karaoke,” said Caron, who with husband Pete has two other daughters Jaimi and Ceri.

Nikey had to battle her whole life to achieve the things she wanted to do, she was a very determined young woman, who refused to let her condition stop her.

“I never felt I could stop Nikey from doing anything she wanted to do, simply because she had epilepsy so we always supported her and helped her do whatever it was she wanted to do,” explained Caron.

But Nikey was often thwarted along the way and Caron said the most recent example of this was Nikey’s dream of gaining paid employment.

“She had to undergo a fit for work assessment, she felt she should be allowed to do a paid job. The assessor was amazed. He said: “we have people come to us and say ‘I have fits so I can’t work’, you are coming here and saying ‘I have fits let me work’ - I think that sums Nikey up, she always wanted to do as much as she possibly could and live life to full.

“That was finally happening for her, sadly it only lasted a short while, but it is a comfort to know she did have that time even if it was only brief,” said Caron.

Nikey’s funeral will be at March crematorium on Wednesday (April 10) at 2.15pm.

Donations in-lieu of flowers for SUDEP Research.