Olympic swimmer Rebecca Adlington’s sister was just 19 when she became seriously ill, sparking a campaign to raise awareness of the potentially life-threatening condition which causes inflammation of the brain
Olympic swimmer Rebecca Adlington reflects on the moment her family’s life was turned upside down, not with a focus on medals or milestones, but on uncertainty.
“It was so unknown,” she admits softly. “They just kept saying loads of different things. It’s meningitis, it’s this, we don’t really know what’s wrong with her. And I think that’s the scariest bit because you’re like, well, how can you treat something which you don’t know what it is?”.
At the tender age of 15, Rebecca watched as her older sister Laura fall seriously ill with what initially seemed to be flu, but quickly escalated into encephalitis – a potentially fatal inflammation of the brain. Now 36, the memory of the confusion, the hospital corridors, and the waiting still haunts her.
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“She went into hospital first and they just kept saying loads of different things,” she remembers. “And then when we got told, we were like, what’s that?”.
Back then, she says, encephalitis was a condition few people had heard of. “This was 21 years ago… not so much. I remember my mum just ordering loads of books online and reading about it. It’s not the same information as what you get now.”
The situation took a dire turn when Laura suffered a seizure and was put into an induced coma in intensive care. Rebecca wasn’t present when doctors delivered the grim prognosis – she was only 15 – but her parents passed on the message.
“They told us… you have got to prepare for the worst. She might not make it through. And if she does… es pull through, we don’t actually know what damage has been done,” she says. “When it’s associated with the brain, you don’t know the damage that’s been left behind.”
What remains most vivid in her memory isn’t simply the terror for her sister – it’s witnessing her parents fall apart.
“I’d never really seen my dad cry or be upset before ever,” she says. “You idolise your parents so much when you’re younger… your parents know everything, your parents are superhuman. And when my parents didn’t have the answer and seeing how worried and upset they were, it naturally affected us.”
Her elder sister Chloe, then 20, took charge whilst their mum and dad remained at the hospital. “Chloe was like, ‘right, I need to go get Becky home’… we just kind of had to step in,” Rebecca recalls. “Any bit of new information that we got told, it was OK, how do we react to it?”.
She recalls her mum shifting into what she describes as a fierce, pragmatic “mum mode”. “Once we got told it was encephalitis, my mum was like, ‘Right. I have to find out everything about it.’ She went into this practicality of, ‘OK, I’m gonna get her better as much as I possibly can by figuring out what this is.'”.
That ordeal – the terror, the absence of awareness, the frantic search for answers – has stayed with her. And now, with World Encephalitis Day approaching on 22 February, Rebecca is lending her voice to ensure other families aren’t left feeling quite so helpless.
“I don’t want a family to be in a situation that we had, which was we never heard of it, didn’t know what it was, took ages to get diagnosed,” she shares. “It’s just that awareness piece… making people go, ‘Oh, OK, I’ve heard of that.’ I think that’s the biggest, most powerful thing.”
This year, she’s leading a campaign with Encephalitis International, introducing F.L.A.M.E.S – an easy-to-remember acronym aimed at helping people identify the urgent symptoms of encephalitis. Despite three individuals being affected every minute worldwide, a staggering 77% of people are unaware of what encephalitis is. Rebecca emphasises that the goal isn’t to instil fear but to empower people.”
It does have a high death rate and that is scary… but it’s not about scaremongering. It’s just going, OK, I have heard of that.
“Fast forward to today, Rebecca’s life bears little resemblance to the scared teenager in a hospital waiting room. She’s now married to Andy Parsons, whom she met on Bumble eight years ago, and they share a four year old son, Alby. She also has a ten year old daughter, Summer, from her previous relationship with Harry. The family navigates what she describes as a modern, blended set-up, with Summer’s happiness at its core.”
When you’re just so focused on your child’s happiness, that’s when it’s easier,” she says of co-parenting. “You just put everything else aside.” However, amidst campaigning and parenting, Rebecca has also faced personal tragedies. She suffered two miscarriages – one in August 2022 and another, later loss, in October 2023.”
I’ve had two,” she states simply. “When you get pregnant for a third time, naively, it doesn’t even enter your mind that it could happen again.
“When you get pregnant for a third time, naively, it doesn’t even enter your head.”
Her initial miscarriage at 12 weeks was made worse by serious complications that followed. “I got sepsis… I was in hospital for about four or five days and I just… it just floored me. Not only are you dealing with this emotion of losing a child, you’re also dealing with, I’m just not well.”
Her second devastating loss occurred at 20 weeks, despite reassuring scans and detecting the heartbeat mere weeks beforehand.
“You have to give birth,” she explains. “It feels cruel to have to give birth… you go to the maternity unit where everyone else is having their healthy babies and you’re there going to deliver something that you know isn’t a happy ending. And then you leave the hospital and you still look very pregnant.”
She credits counselling as being vital to their recovery. “You’re not going to grieve in exactly the same way… what Andy needed to do was very different to me. The counselling really helped us come together rather than go apart.”
Expecting once more, she acknowledges the happiness is tinged with constant worry from the moment they discovered the pregnancy.
“Just bags of anxiety all the way through,” she confesses. “Until that baby is in your arms, this isn’t gonna feel normal.”
Andy has commemorated every week past 22 weeks with a thoughtful note and small token. “He’s done something every week… we kind of were like, we have got to be a little bit excited.”
Their youngsters are each coping in their individual ways. Summer, approaching 11, “absolutely understands” the significance of this pregnancy.
Meanwhile, Alby, aged four, is more preoccupied with whether the baby will “have shoes on” and whether he’ll have to share his toys.
And if she could say one thing to her teenage self in that hospital corridor?
“I was gonna say something like, ‘It will be OK,’ but it’s not always OK,” she reflects. “I’d probably say just lean on your family as much as possible… just recognise that everyone’s going through their own process and really just be there to support each other. That’s all you can do.”
Rebecca is campaigning on behalf of Encephalitis International
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