Mum’s drive to find cure for condition which killed Hayley (20)

Hayley McGurk from Cardenden (pictured at her high school prom) died suddenly at home from an epilepsy-related condition. Pic: Robert Thomson
Hayley McGurk from Cardenden (pictured at her high school prom) died suddenly at home from an epilepsy-related condition. Pic: Robert Thomson

A mother devastated by her young daughter’s sudden death is channelling her energies into finding a cure for the condition which claimed her.

Hayley McGurk, a 20 year-old athlete from Cardenden, died on July 20 from a phenomenon known as SUDEP - Sudden Unexplained Death from Epilepsy.

My hope is that one day a cure will be found for this silent killer so that no other parent has to go through the agony of finding their child as I did

Alana Johnston

The condition - although relatively rare - affects 600 people in the UK each year and researchers are still unsure of the reasons why.

For Hayley’s mother, raising cash to help those scientists solve that problem is absolutely vital.

Alana Johnston said: “My hope is that one day a cure will be found for this silent killer so that no other parent has to go through the agony of finding their child as I did.”

Hayley, a former pupil at Lochgelly High School, had been diagnosed with epilepsy at the age of ten.

A keen athlete, Hayley won many awards at school, especially in netball, and had become an accomplished sprinter through Dunfermline and West Fife Athletics Club.

“Hayley never wanted to be wrapped up in cotton wool, she just wanted to be treated the same as everyone else and would often say “Dad, I’m perfectly fine,” said Alana.

“She had her heart set on becoming a dental nurse, it now breaks my heart every time I go into her room and see the handwritten envelopes to all the dentists in Fife she had painstakingly written to on the Saturday before she died”.

Alana and Hayley’s dad, Bernie - who have raised £7000 so far - have a whole host of fundraising events lined up in aid of Epilepsy Scotland.

On Saturday, Hayley’s Walk will see ramblers trek 18 miles along John Muir Way from North Berwick-Wallyford.

A Sids Garage Gig at The Duchess takes place on September 19 and fitness instructor Claire Chrisp, a friend of Hayley’s, leads a two-hour zumbathon at Bowhill Community Centre on Saturday, September 26 from 10am.

The links to Just Giving outlets for the event are Pete Munn Bernie McGurk and also Epilepsy Scotland

What is SUDEP?

There are half a million people in the UK who have epilepsy and for many the condition is manageable and bears little impact on their life.

However SUDEP - Sudden Unexplained Death from Epilepsy - affects around 600 people each year, for reasons which are still unknown.

However, researchers have made an important breakthrough in discovering that an individual’s genetic makeup may contribute to the risk of SUDEP.