A mum is sharing the heartbreaking loss of her daughter after she was allegedly diagnosed with the only known case of a rare brain tumour.
Sarah Levett started to fear the worst when her only child, Jody, suddenly began losing her balance.
As she rapidly deteriorated, quickly unable to fasten the buttons on her school shirt, which left her frustrated, the 45-year-old booked her in for a simple check up.
But then, their entire world came crashing down, as Jody was diagnosed with a stage four brain tumour – and it’s believed her case was the only known type in the world.
Now, Sarah is sharing her daughter’s journey in a bid to raise awareness for the signs to look out for before it’s too late.
“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.”
In September 2018, Jody underwent emergency surgery to remove 80% of the tumour, followed by a course of chemotherapy and radiotherapy.
After 10 months, she was officially declared stable enough to stop treatment.
And while the family believed they were out of the woods, a follow-up scan a year later revealed the tumour had grown once again.
At this stage, though, doctors were only able to offer treatment to extend her life, as there was no cure available.
Sarah said: “I was left heartbroken, 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.
“Now, we were back to square one all over again.
“Despite the bleak news, it was impossible not to hope for a miracle.
“Because how do you accept that your baby isn’t going to live?”
Jody tried to spend her final years as a “normal” teenager, seeing her friends and always making plans.
Due to her rapid decline, four more surgeries were needed and soon, a brain bleed was discovered.
She said: “It started to feel like we were living on borrowed time.
“We got through the next few months until I started to notice a change in her again.
“It was another bleed, and from there, she went downhill drastically.
“I never left her side, as she was unable to move or speak, and then her breathing changed.
“At that moment, I knew she was slipping away from me.”
At aged 16, in 2022, Jody sadly passed away.
Sarah claims as only limited information was obtained from several biopsies, doctors were only able to conclude that it was a rare right frontal lobe tumour at first.
At a special review meeting following her death, the mum was told, however, it was likely the only known case of that type in the world, which is why so little information was available.
As Sarah felt “numb” from losing her only child, she tried to focus on remembering her daughter’s bubbly personality and kindness.
And knowing she isn’t the only parent to go through a loss like this, she decided to take action.
As little funding is given by the government for research into brain tumours, as well as support for grieving parents, Sarah has now set up a petition calling for change.
Currently, it’s at 1,264 signatures out of 1,500.
Sarah says that, ultimately, she’s doing this so others don’t have to suffer like she, and her daughter, have done.
She added: “It’s been extremely lonely.
“The house feels so empty without her around.
“The hardest question people ask me is: ‘Do you have any kids?’
“Explaining that she’s no longer with us never gets any easier.
“And this is why something has to change.
“She should still be here with me, lighting up any room with her beautiful face.
“There’s all these charities working on research and treatments for brain tumours; with little money from the government to help with this.
“The mental health support for grieving parents is also lacking and seems to be getting lost in it all.
“I know there’s a lot of strain on health care 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.”
READ MORE: Woman ‘24 going on 74’ after 18 months of vaping quits after THIS symptom appeared
