A mum has shared how she discovered her daughter had an extremely rare brain tumour to warn other parents.
Sarah Levett, 46, was perplexed when her daughter, Jody, started losing her balance.
The then 12-year-old would bump into wheelie bins on the pavement, was unable to walk in a straight line and would struggle to fasten the buttons on her shirt.
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The concerned mum booked her teen in for a simple check-up and received devastating news.
Jody had a very rare stage four brain tumour believed to be the only known type of its kind in the world.
“It was absolutely terrifying,” the nursery worker, from Surrey, told Need To Know.
“As the doctor spoke about how big the tumour was, I couldn’t take it all in.
“I just wanted it gone.
“But I tried as hard as I could to hide how scared I was, as Jody was so young.
“I didn’t want her to worry – in fact, she was more bothered about the fact she was unable to go to school.
“She started bumping into things, like a wheelie bin on the pavement, only a few months before the diagnosis.
“Then, this progressed into migraines, not being able to walk in a straight line, and always being sick.
“Jody quickly became frustrated, often lashing out in screaming fits, which really wasn’t like her.
“I hoped it was just part of her autism – but then we found out the true nightmare.”
Jody underwent surgery to remove 80% of the tumour, followed by a gruelling course of chemo- and radiotherapy.
Ten months later she was declared stable enough to stop treatment.
But a year later, tragedy ensued when a follow-up scan showed the tumour had grown back.
Jody began to rapidly decline and required four more surgeries were needed.
That’s when doctors found a brain bleed and told her mum the news no parent should hear: there was nothing more they could do.
Sarah said: “I was left heartbroken [when doctors told me that there were no more options], replaying their words in my mind.
“How could I lose my little girl? My only child?
“Just a few days before, I was thinking about the future and couldn’t believe how far we had come.”
In 2022, aged just 16, Jody tragically passed away.
Since then, her mum has been fighting to keep her memory alive by sharing the teen’s story – and unusual symptoms – to help other parents spot the signs as soon as possible.
On 22 March, Sarah is having a fundraiser organised on her behalf for the Brain Tumour Charity, a music event with a Jon Bon Jovi tribute band and tombola raffle.
She added “The hardest question people ask me is: ‘Do you have any kids?’
“Explaining that Jody is no longer with us never gets any easier.
“And this is why something has to change.
“The main aim [of the fundraiser] is to continue the awareness of brain tumours and changes needed, and the lack of mental health support for bereaved parents.
“I know there’s a lot of strain on healthcare at the moment, but I really don’t want any other parents or children to have to go through the unimaginable heartbreak like we have done.”
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