When 12-year-old Jody tripped and fell multiple times, had trouble walking straight, and struggled to fasten her shirt buttons, her mother never suspected it could be a sign of something serious—until doctors delivered the devastating news of a rare brain tumor.
After years of battling the disease, Jody passed away in 2022, at the age of 16, and her heartbroken mother, Sarah Levett, from Surrey in South East England, now raises awareness about the condition, hoping that parents could spot the signs as soon as possible.
Levett, who is organizing a fundraiser next month for the Brain Tumor Charity in her daughter's memory, says she does it so no other parent or child has to endure the unimaginable heartbreak they experienced.
When Jody first experienced symptoms like migraines, difficulty with balance, and frustration that led to screaming fits, Levett thought it might be related to her autism. But during a check-up, doctors discovered that Jody was in the advanced stages of a rare brain tumor.
"It was absolutely terrifying. As the doctor spoke about how big the tumor was, I couldn't take it all in," Levett recollected the moments following the diagnosis.
"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," she said.
Jody underwent treatment for around 10 months, including a surgery that removed 80% of the tumor, followed by chemotherapy and radiotherapy until she was stable. However, a year later, a follow-up scan revealed that the tumor had returned.
As Jody's condition rapidly declined, she underwent four more surgeries and doctors discovered a brain bleed before she tragically died.
"The main aim [of the fundraiser] is to continue the awareness of brain tumors 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," Levett said.
Brain tumors may present with symptoms such as seizures, balance issues, behavioral changes, slurred speech, fatigue, weakness, headaches, nausea, and vomiting.
