'My five-year-old daughter had headaches - then was given 12 months to live'

The parents of a five-year-old girl battling an extremely rare brain tumour, which accounts for less than 1% of cases, are holding onto hope that she will "prove doctors wrong" by surpassing her 12-month life expectancy. Charlotte and Stefan Hassall, both aged 36, have fondly spoken of their daughter Rosie as "a little firecracker" who has "always been bubbly".

Their turned upside down in November 2024 when Rosie began suffering from severe and unusual eye movements.

Charlotte, who works for the , and Stefan, a employee, initially took Rosie to a doctor and an optician, but her symptoms were dismissed as potential migraines, a common ailment in the family. However, as Rosie's condition deteriorated, making it excruciating for her to cry or even laugh, they insisted on further examination.

READ MORE:

READ MORE:

A subsequent eye test suggested nerve damage in Rosie's left eye, leading to an urgent MRI scan.

Just days before , the family's worst fears were confirmed: Rosie had a kiwi-sized brain tumour. Following a biopsy, the devastating news came that the tumour was cancerous, inoperable, and alarmingly aggressive, believed to have developed rapidly over days or weeks.

Doctors have given an average prognosis of nine to 12 months, but due to the rarity of Rosie's cancer, there is significant uncertainty. The Hassalls are now speaking out, hoping to raise awareness and potentially aid others facing similar battles in the future.

Charlotte, from Cheshire, spoke with unwavering hope about her daughter Rosie's battle with a serious illness saying: "Rosie is a fighter, we can see how much she has fought since she's had this and I'm hoping that she proves them wrong and they can learn off her. She will be the one that gets through it, but you never know, and if she's not, we can help other families down the line with what we're going through."

Rosie first began to feel unwell in November 2024 with head pains and abnormal eye movements. Charlotte recalled: "We didn't think anything of it at first but over the next few days, the pain got worse. We were having tea one night and she said she'd learnt to go cross-eyed but her left eye actually pinged the other way. That's when we realised something had happened."

Medical consultations followed as Charlotte sought help for Rosie, initially considering migraines, which are common in the family. Despite an optician's visit where everything appeared normal, Rosie continued to deteriorate.

Charlotte shared that after becoming "really unwell", they visited Leighton Hospital in Cheshire where Rosie was given antibiotics for white spots on her throat, yet as Charlotte noted, she "never really picked up from there".

"She had 27 episodes of this pain in her head and the doctors were a little bit stumped about what it could be," she said, adding they were also advised to give Rosie Calpol to help with the pain. "She was just so poorly, rolling about in pain on the floor, she was really uncomfortable and really quite stressed out. She tried to cry but it was so painful, she couldn't laugh or sneeze because it hurt."

After seeking a second eye test, where Charlotte said her daughter's symptoms had become "a lot worse", it was thought Rosie had suspected nerve damage in her left eye and she was referred to an ophthalmologist. Rosie underwent "thorough" tests before being sent for an MRI scan at Leighton Hospital on December 19.

The family received the results of the scan on December 22, which revealed a six-centimetre tumour in her brain. "Everything just stops, everything goes quiet," Charlotte said.

"I argued with them at the time and said they're wrong because they've only done one scan, they can't surely be right off one scan."

The same day, Rosie underwent an MRI scan with contrast – where a dye is injected to make certain tissues and blood vessels show up more clearly – before the family were referred to Alder Hey Children's Hospital in Liverpool and the presence of the tumour was confirmed.

The family managed a brief Christmas at home, but had to rush back to the hospital on Day as little Rosie faced a biopsy on December 27. On January 26, they were hit with the devastating news: Rosie was diagnosed with a "new entity" of paediatric bithalamic glioma.

These tumours are incredibly rare, making up less than 1% of brain tumour cases, Brain Tumour Research said. "We were told from the start it was inoperable because of where the tumour sits, we were told it was a very aggressive tumour," explained Stefan.

Charlotte shared the urgency of their situation: "They said it was literally a matter of days or weeks that it could have happened and grown quite quickly because the symptoms just came on. Even though she has a paediatric bithalamic glioma, it's a new entity, it's a very rare form of cancer that she's got – when you it, there's not much you can find."

Despite the grim prognosis of nine to 12 months for bithalamic gliomas, Rosie continues her fight with ongoing chemotherapy after previous radiotherapy sessions, and regular scans every three months to check on the tumour's growth. The family clings to hope, knowing Rosie is "a fighter".

"Rosie is incredible and she's just tried to carry on as much as she can, she's such a tough cookie," Charlotte said. By sharing Rosie's story, they aim to raise awareness and drive research that could help others in the future.

"If anyone knows anything more about her cancer, we can learn from it and help other families as well," Charlotte added.

The family have set up a GoFundMe page to garner support as Charlotte and Stefan have taken leave from work to care for Rosie and make her non-hospital days enjoyable, raising over £33,000.

To find out more, .