Sarah Levett, 46, from Surrey, says she started to worry when her daughter Jody, 12, struggled to walk straight or button her shirt, and so she took her along for a check-up
A mum has told how her 12-year-old daughter began struggling to walk straight and bumping into objects before being diagnosed with a rare brain tumour.
Sarah Levett, 46, from Surrey, was perplexed when her daughter, Jody, started losing her balance and would bang into wheelie bins on the pavement, while she also started having difficulty fastening the buttons on her shirts.
The worried 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,” said the nursery worker. “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 four more surgeries were needed. That’s when doctors found a brain bleed and told her mum there was nothing they could do. Sarah told told NeedToKnow: “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.”
