Memory walk to raise awareness of SUDEP to be held in Weston-super-Mare

PUBLISHED: 08:00 16 September 2018

Johdi's family at the starting line of the SUDEP awareness walk. Picture: Eleanor Young

Johdi's family at the starting line of the SUDEP awareness walk. Picture: Eleanor Young

Eleanor Young

A Cheddar mum will lead an awareness march about the dangers of epilepsy after her ‘beautiful’ daughter died last year.

Johdi's family at the starting line of the SUDEP awareness walk. Picture: Eleanor YoungJohdi's family at the starting line of the SUDEP awareness walk. Picture: Eleanor Young

Tanya Russell will lead a group of people wearing purple along Weston’s seafront on October 27 to raise awareness for Sudden Unexplained Death in Epilepsy (SUDEP) which killed her 17-year-old daughter Johdi in October last year.

The memorial walk will pay tribute to those who lost their lives to epilepsy and SUDEP but also promote SUDEP Action’s Prevent21 campaign.

The campaign aims to bring SUDEP to the public’s attention as well as lead research into helping people with epilepsy note changes in their seizures.

Tanya hopes the walk could help to educate other people with epilepsy about SUDEP.

Johdi's family at the starting line of the SUDEP awareness walk. Picture: Eleanor YoungJohdi's family at the starting line of the SUDEP awareness walk. Picture: Eleanor Young

She told the Mercury: “It will aim to raise awareness of SUDEP and get the potential dangers of epilepsy across to people, but mainly the Prevent21 campaign.

“This time last year I had never heard of SUDEP and I also was not aware of the dangers of epilepsy – other than the obvious like injuries during seizures and not being alone in the water.

“Had I known about the Prevent21 campaign I would have made sure Johdi was set up and could be advised on any changes.

“I can never bring my girl back but if I can help just one person to understand the dangers then I feel I have achieved something good.

“Johdi was a beautiful, kind, caring, happy and loving 17-year-old with a whole future ahead of her but sadly epilepsy stole her from me.”

Tanya has more than 40 people confirmed to attend as well as an additional 35 people who have shown their interest.

The walk will start at 1pm at the front of the Grand Pier and participants will march up to Knightstone Island, around Marine Lake and back to the pier where a reception will be held at Tiffany’s Tearoom.

People are encouraged to dress as ‘wacky’ as they like but Tanya asks purple is worn as it is the colour of SUDEP Action.

She added: “I know Johdi would be extremely proud of everyone taking part.

“Were she here, it would be something she would join in on because she never knew about the Prevent21 campaign or the dangers of epilepsy.

“Although it can be scary, to be armed with such information meaning you can change the way some things are done, she would want to be a part of.”

Tanya held a ball on the Grand Pier last year, which raised more than £7,000 for SUDEP Action.

A second ball in March this year raised a similar amount of money.

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