A DISTRAUGHT mum found her teenage daughter dead in bed after suffering from a condition she “knew nothing about”.
Johdi Russell was 17 when she passed away from sudden unexplained death in epilepsy (SUDEP) on October 5, 2017.
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Her mother Tanya was aware her daughter had epilepsy and needed to manage her seizures, but had no idea they might kill her.
The 50-year-old said Johdi’s first febrile seizure was aged just four months, but she was given no formal diagnosis.
She then had a “relatively normal” childhood until the age of 16, when she had her first witnessed tonic-clonic seizure, which involves the stiffening, twitching or jerking of the muscles.
After several more, Johdi was eventually told she had juvenile myoclonic epilepsy (JME) – a common syndrome that usually begins in teens or young adults.
The schoolgirl had between two and four seizures a week, but medication helped to keep these under control.
That was until September 2017, when Tanya and her partner Mark were due to go on holiday to Marbella, Spain, for a few days.
Tanya said she felt a sense of “foreboding” and decided to call the trip off at the last minute.
“I can’t explain it,” she said. “I knew I couldn’t leave.”
The mum’s birthday soon arrived, and Johdi gave her a heartfelt letter.
It read: “You’re the most supportive, caring, loving and understanding mumma ever.
“You make me feel so happy and supported and safe when I’m with you.
“I always know no matter what you will try your best to help me out.
“I couldn’t have got through this year without you, mum.
“I couldn’t have got anywhere without you actually – you are just amazing, and an incredible mum.
“Always stay so incredible and crazy! I love you to infinity and beyond.”
Tanya, from Cheddar, Somerset, hugged her daughter, told her that she loved her and went out with her friends that evening.
The next day, Johdi was dead.
‘WE NEVER KNEW THE RISKS’
She had had a seizure during the night so she stayed home from college, where she was studying childcare, and Tanya and Mark were off work.
They left their daughter resting in her bedroom, but checked on her every 90 minutes or so.
At 9.30am and 11am, she was fine. But when Tanya went to see her at 12.25pm, she was slumped over, face down, and motionless with blue lips.
“My beautiful, young, vibrant, happy, kind girl was dead,” she said.
“What followed was a blur. I grabbed a phone and dialled 999.”
Paramedics arrived, worked on Johdi for two hours and rushed her to hospital, but sadly, she couldn’t be saved.
A post-mortem confirmed the cause of death was SUDEP – something Tanya never knew existed.
“Despite multiple family members having epilepsy, we never knew about SUDEP or that Johdi was at risk,” she added.
“But we know now that Johdi’s tonic-clonic seizures and nocturnal seizures placed her at the highest risk.”
Tanya has since worked closely with hospitals and GP surgeries to improve care for epilepsy patients, including training staff on the risks of SUDEP.
She also holds an annual Purple Ball to raise awareness of the condition and money for the charity SUDEP Action, and has campaigned for seizure alarms to be made available on the NHS.
“It makes me feel that Johdi’s sad and preventable death has meaning,” she said.
Speaking to the BBC, Tanya added: “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.”
A spokesperson for the 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 then, 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.
“We continue to ensure they meet with and are familiar with colleagues in our adult services before their transition is complete.
“Our paediatric epilepsy team has also continued to expand, with three specialist nurse practitioners with expertise in childhood epilepsy now in post, and we have further recruitment planned.
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“SUDEP is clearly an important issue for patients and families to be aware of.
“The condition is always discussed at the point of diagnosis, where our clinician will provide a written information sheet, and it can be discussed further with clinicians at subsequent consultations as required.”
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What is SUDEP?
EPILEPSY is a common condition that affects the brain and nervous system and causes frequent, unprovoked seizures.
It affects around 620,000 people in the UK – or one in 100.
The most common symptoms include:
- Uncontrollable jerking
- Losing awareness and staring blankly into space
- Becoming stiff
- Strange sensations, such as a “rising” feeling in the stomach, unusual smells or tastes, a tingling in the arms or legs
- Collapsing
- Passing out
Seizures can be dangerous, but there are treatments which help most people have fewer of them, or stop having them completely.
However, some people die unexpectedly during or after a seizure. This is known as sudden unexpected death in epilepsy (SUDEP).
Little is known about what causes SUDEP, or who is most at risk, but researchers suggest the risk increases:
- In people who have generalised tonic-clonic seizures (GTCS), especially if they happen at night or when asleep
- As the number of GTCS increases
- In those with very frequent seizures
- If you’ve had epilepsy for more than 15 years
- If it started before the age of 16
- In men
- In younger adults
There are at least three epilepsy-related deaths every day in the UK.
SUDEP occurs in about one in every 1,000 people annually.
Source: NHS, SUDEP Action and the Epilepsy Research Institute UK