September 23 2014 Latest news:
Sunday, March 9, 2014
The family of a 23-year-old epilepsy sufferer who died suddenly almost a year ago has raised £12,000 to fund research into the condition.
Nikey Robinson, of March, died of Sudden Unexpected Death in Epilepsy (SUDEP) in her sleep on March 21, 2013.
Since then, her parents Caron and Peter Robinson and her sisters Jaime and Ceri, with the help of friends, have embarked on the Nik’s Shout for Epilepsy campaign.
Nikey’s mother, Caron Robinson, said: “At its worst, she would suffer 200 seizures a month, but Nikey lived her life to the full and without fear.
“She met every challenge and rose to it. She had no limits and wanted to try everything.
“She went on holiday abroad, did bungee jumps and went on the biggest rollercoasters. Nikey wanted what everyone else took for granted.
“She was a beautiful, selfless, generous soul and an advocate for others less able.
“With this in mind we could think of nothing less apt then to raise awareness and funds for epilepsy charities in her memory and honour, in the hope to provide help and advice for others whose lives are affected by epilepsy.”
There are at least three epilepsy-related deaths a day in the UK, the majority from SUDEP.
Nik’s Shout For Epilepsy supports three charities - SUDEP Action, Young Epilepsy and Epilepsy Action.
They have held bingo nights, race nights, discos, spiritualist evenings, jewellery sales and zumbathons to raise awareness of epilepsy.
Jade Fell and Lola Dack took part in a tandem skydive and family friend Paul Harlock has taken on a gruelling year-long weight loss challenge.
Nikey attended both school and college at St Elizabeth’s Centre in Bishop’s Stortford, which provides education, care and medical support to people of all ages who have epilepsy and other complex needs.
One of the chief aims of the campaign is to raise funds so that the centre can hold a Leavers Ball every year.
Nik’s Shout For Epilepsy is holding a bingo night on March 28 at Benwick Village Hall and a balloon release is planned to coincide with National Epilepsy Awareness Week, which runs from May 19-25.
To give your support to Nikey’s campaign call 07762 969693 or visit the Nik’s Shout For Epilepsy Facebook page.