“We wanted to do something to show our support”

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A Fenland school is set to launch a year of fundraising in memory of March woman Nikey Robinson whose funeral is today (Wednesday).

The 23-year-old died in her sleep at her March home of the rarely diagnosed SUDEP (Sudden Unexpected or Unexplained Death in Epilepsy) on Thursday March 21.

Now Benwick School has announced plans to have a year long campaign to raise money in Nikey’s memory under the banner Nik’s Shout for Epilepsy, a fund set up by her family.

Nikey’s proud mum Caron Robinson worked as a teaching assistant at the school for around 10 years and staff felt they wanted to do something to show their support. Nikey’s nephew and niece are also pupils at the school.

Behind the school’s plans is Jenny Fell, who worked alongside Caron as a teaching assistant, who now works as a childminder in the village.

She said: “We were all devastated when we heard of Nikey’s death and felt so much sympathy for Caron, Pete and the family and wanted to do something to show our support.”

The school normally holds a raft of fundraising events throughout the year for causes such as Comic Relief and Children in Need, but Jenny said this year all events will raise money for Nik’s Shout for Epilepsy, with the cash going to SUDEP and Epilepsy Research.

Nikey was a normal happy child until the age of seven when she suddenly developed severe epilepsy and at its worst the condition meant she was suffering up to 200 fits a month.

The condition blighted much of Nikey’s life, leaving her isolated and needing 24-hour support form personal assistants. But in recent times she was finally living the life she wanted.

She had her own home and had started work as a volunteer at the Sue Ryder shop in March. She had also started creating jewellery and bespoke tote bags, which were on sale at Fossils Galore in the town.

There is no explanation as to why people suddenly develop epilepsy and for those like Nikey it can have a devastating affect but she had finally turned a corner and her life was on the up.

Making her death all the more poignant. SUDEP is a little known condition, and is rarely diagnosed as a cause of death.

The school’s first fundraiser will be a bingo evening as Nikey loved playing the game.

It will be held on May 17 from 6pm at Benwick Village Hall and will be open to anyone,including children.

Jenny explained the date was chosen as it is close to Nikey’s birthday, she would have been 24 on May 20, which is also the start of National Epilepsy Week.

In the past Nikey and her family have tried to raise awareness of the condition during Epilepsy Week and it was felt it was an appropriate starting point for the school’s campaign.

The school is appealing for items to offer as prizes for both the bingo and also a raffle, which will be held on the evening.

Epilepsy in Action, a national charity, is also providing merchandise such as pens and wristbands to sell on the night and at any future events.

Jenny said the school council will also be meeting to discuss fundraising ideas.

Nikey’s family, which also includes her sisters Jaimi and Ceri, have set up an on-line tribute fund where people can make donations in her memory. http://nikey.robinson.muchloved.com