A BONHILL mother is fighting to raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP) following the tragic loss of her daughter in June.

Janette Dunion and her family have been working closely with SUDEP Action, a charity which raises awareness of epilepsy risks and provides support for families affected by SUDEP.

Janette's daughter Samantha Dunion tragically lost her life in June of this year at age 19 following an epileptic seizure.

Last Monday Janette, who is an employee of West Dunbartonshire Council, organised for Clydebank's Titan Crane to be lit up to mark SUDEP Action Day on October 23.

Janette, along with Samantha's sister Nicola and dad Hugh watched as the 150ft cantilever crane turned orange and purple – the colours associated with the action day.

"I knew the crane had been lit up for causes in the past," Janette told The Reporter. "And I thought it was worth asking.

"To see the colours on the crane was actually very emotional, all the family and some of Samantha's friends attended."

Samantha worked in Santander's head offices and previously attended Bonhill Primary and the Vale of Leven Academy.

She was diagnosed with epilepsy at the age of 16.

"She was just full of get-up-and-go," Janette said. "Nothing held her down she was so full of life. Even when she was diagnosed at 16 she was very determined. She hung on for the ride and really enjoyed life.

"Before starting her job, she studied music at West College of Scotland in Greenock. She loved singing and was getting into song writing."

Janette has described the loss of Samantha as "horrendous" and wants to help create greater awareness of the risk of SUDEP and the support which is available.

A Fatal Accident Inquiry between November 2010 and March 2011 into the deaths of 19-year-old Erin Casey and 15-year-old Christina Fiorre Ilia – who both died as a result of epileptic seizures – found that better awareness of SUDEP could have prevented the deaths.

Following the FAI, Sheriff Alistair Duff recommended that "the vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP on first diagnosis or within a very short time thereafter."

However, despite this, Janette says more awareness of the seriousness of the risk is needed.

She said: "When Samantha was diagnosed the hospital consultants did make us aware of SUDEP but it felt like they were telling us simply because they had to. We didn't properly consider it happening to Samantha.

"People still think you can't die from epilepsy when obviously you can."

Around 60,000 children in the UK have epilepsy which is one of the top-ten causes of early death among young people.

Samantha Ashby, Director of Policy and Development at SUDEP Action said: "There are 21 epilepsy deaths a week in the UK, yet many people are unaware of the risks and the steps they can take to reduce them; even though 42% of epilepsy deaths are potentially avoidable.

"This is why SUDEP Action began SUDEP Action Day back in 2014. We join forces with epilepsy organisations across the world, every October 23rd, to shine a light on the largest cause of death in people with epilepsy, helping empower people through increased awareness.

"We hope that by doing so, we can help people with epilepsy learn about how best they can manage their risks - in the hope that future lives can be saved."

Janette said the staff at Santander were "fantastic and so supportive" to Samantha.

The office held a fundraising PJ day in August raising £360.28 for Epilepsy Scotland.

Janette has also taken part in other fundraising efforts including a 150ft zip-slide across the Clyde in August (something Samantha had spoken herself about doing the week before she died).

She raised a whopping £1735.00 and friends and family completed a sponsored walk up Ben Lomond raising £1567.

"I'm overwhelmed by everyone's support. All in we've raised about £7000 for Epilepsy Scotland who have helped me since Samantha was first diagnosed."

If you would like more information about SUDEP visit SUDEP Action's website: sudep.org or call their support line on 0131 516 7987