Fenland family aim to fund epilepsy support dog in memory of 'shining light' Nikey
As the anniversary of the death of Fenland woman Nikey Robinson draws near her mother Caron has launched her latest fundraising bid in memory of the daughter she described as a "shining light".
Nikey died at the age of 23 as a result of SUDEP - sudden unexpected death linked to epilepsy - nine years ago on March 21.
During her short life Nikey made an impact working with her mum and family to raise awareness of epilepsy, a condition she suffered ever since she started having seizures just two days before her seventh birthday.
For the following eight years Nikey, who lived with her family in Doddington at the time, went through 24 medications in a bid to control her seizures - at one point she was suffering up two 200 a month.
In 2006 Nikey was finally given a drug change that worked, sharpening her memory and enabling her to fulfil a dream to swim with dolphins - a story covered at the time by the Citizen.
Nikey attended a special school for children with epilepsy where she was the instigator of an annual leavers prom being held.
On March 20 2013 Nikey went to bed at around midnight and sadly she never work up. A bed alarm never sounded and it was only at 8am the next morning that Caron discovered what had happened.
She said: "At 8am her alarm clock went off but she didn't switch it off. Nik had died as a result of SUDEP - I knew she was at risk, which is why she had a bed alarm and an anti-suffocation pillow. Anyone with an epilepsy diagnosis is at risk of SUDEP, although many with the condition aren't aware as medics are reluctant to raise the possibility for fear of frightening patients and their families.
"I believe Nik fell asleep - her lights went out. There was no noise and her seizure alarm was not triggered.
"She was an amazingly brave young lady. We try not to mourn her but celebrate her life. She leaves a big Nikey-shaped hole our lives that no-one will ever fill.
"Nikey was a shining light in the world of epilepsy,often looking out for and speaking up for others less able than herself.
"Since her death we have had many charity events in her memory - having now donated over £30,000 to various epilepsy charities and back to the school that Nik joined aged 13. They used the money to fund their next leavers prom. Now the school always holds a prom - which is a lovely legacy she left them."
Now Caron and the family, who now live in March, have set their sights on raising £8,000 over the coming months to fund the training of an epilepsy support dog.
Caron said: "It will be a girl puppy and she will be called Nik. I have committed to raising the £8,000 so the puppy can be named after Nikey, who absolutely loved dogs.
"An epilepsy support dog can give up to 45 minutes warning that a seizure is coming allowing the handler to be able to make themselves safe ready for the inevitable.
"It is an incredible thing and we are really proud to be doing this in Nikey's memory."
Caron is planning a night of live music with local band Scooted-n-Booted and singer Haylie-Mai Vocals.
The event is being held on Saturday March 26 at Westwood School in March starting from 7.30pm.
Tickets are £15 and include food, but it is a case of bring your own drink. They are available from Caron on 07762969693 or Tracey on 07882086194. Anyone who would like to donate a raffle prize can also contact either Caron or Tracey.
