Somerset mum raising awareness after daughter's sudden epilepsy death

Johdi had just started a level 3 childcare course at Bridgwater College when she unexpectedly passed away

"I wanted Johdi's death to mean something," says Tanya Russell, as she recalls the shock at losing her teenage daughter.

Johdi, who had epilepsy, was a bright 17-year-old from Somerset when she died "out of the blue" from a condition her mum "knew nothing about".

She died on 5 October 2017 from sudden unexplained death in epilepsy (SUDEP).

Since then Mrs Russell, 50, from Cheddar, who also has epilepsy, has campaigned to change processes in hospitals and GP surgeries to make sure families with children with epilepsy are informed about SUDEP.

She also hosts a yearly ball to raise money for SUDEP charities and support other bereaved families.

Mrs Russell said: "Johdi was amazing and absolutely hilarious, she was one of those girls who always went above and beyond for people.

"I always describe her as like sunshine on a rainy day."

Johdi had epilepsy from birth, along with several of her family members

On the morning of her death, Johdi had a seizure at home and was taken to bed. Her mum checked on her several times but a few hours later found Johdi face down in bed with blue lips.

"I noticed that the glass of water was on the floor and that she didn't respond," she said.

"I called out for Mark, my husband, and we got her onto the bed, her lips were blue - we could tell she'd gone."

First responders and a doctor quickly arrived after being flown in by air ambulance.

"That day was the first time I had heard of SUDEP, I have never heard of it before and they were saying it," she said.

Johdi was very close with her younger sister Amy

Charity Epilepsy Action says SUDEP is a rare condition which affects around one in every 1,000 adults with epilepsy each year.

According to SUDEP Action, the cause of SUDEP is not yet known, with researchers investigating a range of possibilities such as the effect of seizures on breathing and the heart.

Mrs Russell has gone on to qualify as a personal counsellor, finishing a two year degree and has just opened a private practice

Mrs Russell describes meeting her daughter's consultants six weeks after her death and coming away with "so many questions".

Mrs Russell said she felt "changes needed to be made" and has worked closely with the hospital and her GP surgery to improve awareness about SUDEP.

Improvements made by the hospital include on-going work to smooth the transition between child and adult clinics and an automated email response by the epilepsy team with advice on what to do in an emergency.

"It's no reflection on anybody - consultants, the hospital or anything," Mr Russell.

"It's just so many things fell by the wayside so I started working with my GP surgery and the hospital for the kind of changes that I felt would have really benefitted us."

'Service strengthened'

She also set up the Purple Ball, a yearly fundraising event held in Somerset to raise money and awareness for SUDEP Action.

The event has raised over £25,000 and is gearing up for its sixth event next year, on the anniversary of Johdi's death.

"We always think how Johdi had 17 amazing years and one bad day, we always want to celebrate her life with others and make sure she isn't forgotten," Mrs Russell said.

A spokesman for Somerset NHS Foundation Trust said: "We'd like to offer our condolences to Mrs Russell and her family following Johdi's very sad death.

"Since Johdi's death, we have continued to strengthen our paediatric epilepsy service, with a particular focus on the area that covers the transition to adult services, where we have recruited to a new transition lead post.

"This also involves developing a transition plan in partnership with the young person and their parents, to ensure they are supported in being able to manage their own condition."

The trust has also expanded its paediatric epilepsy team with three specialist nurse practitioners with expertise in childhood epilepsy now in post.

SUDEP is also discussed at the point of diagnosis, with a written information sheet provided.

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