Rosie Hassall, a vibrant five-year-old from Cheshire, began experiencing headaches and eye issues in late 2024. In December, an MRI revealed a 6cm brain mass, later diagnosed as a paediatric bithalamic glioma with a rare genetic abnormality – an aggressive and inoperable tumour, with only three other cases seen in Alder Hey Children’s hospital, and a prognosis of nine to twelve months. Rosie began chemotherapy and radiotherapy in early 2025, facing the disease with remarkable strength and determination. Her family is now raising awareness for brain tumours and supporting Brain Tumour Research, inspired by Rosie’s courage and resilience.
Here is Rosie’s story, as told by her mum, Charlotte…
Rosie is our little firecracker; a sassy, sparkle-loving princess with bright pink hair who adores singing, dancing, and dressing up. She’s full of personality, always knows what she wants, and brings so much joy to our family. Her big brother, Charlie, is her biggest supporter, and together, they turn every day into an adventure.
Looking back, it’s hard to pinpoint when it all began, but we think the journey started in early November 2024. Rosie started complaining about pain in her forehead. At first, we thought it was just a headache, so we gave her Calpol, but the pain began to come more frequently. She even mentioned it at school and to her grandparents, so we booked a doctor’s appointment, and as we got closer to it, the pain grew worse.
One evening, while we were having tea, she said, “Mummy, look what I can do,” and went cross-eyed – But her left eye didn’t just cross; it actually pinged outward.
She wasn’t in pain and didn’t seem to notice, but it was alarming. From that point, we noticed her left eye appeared slightly delayed.
We booked an optician’s appointment at Vision Express alongside the doctor’s one. The optician found nothing wrong, but the doctor suspected migraines and asked us to keep a log of the pain.
During this time, Rosie seemed more run-down than usual. One Saturday, we took her to out-of-hours care because she was very unwell. The doctors noticed white spots on her throat, gave her antibiotics, and diagnosed an infection. Still, something didn’t feel right with her eye, so we sought a second opinion. That doctor confirmed she had a squint and referred us to ophthalmology at the Leighton Hospital in Crewe. The GP also arranged a follow-up, as migraines didn’t seem typical for a child her age.
Between the first and second GP appointments, Rosie endured 27 episodes of head pain.
She was on a lot of Calpol, and we were really worried about it. At the second appointment, the doctors acknowledged how frequent the pain had become but still couldn’t pinpoint what was going on, so they told us to continue giving her Calpol.
That Friday in late November, we celebrated Charlie’s birthday, but Rosie wasn’t well at all so we returned to out-of-hours care. While the doctor again noted the infection and fever, they also referred her to paediatrics due to the recurring head pain. At that point, we had referrals to both ophthalmology and paediatrics.
Ophthalmology saw her first and suspected nerve damage, which could be causing pressure on her head and affecting her eye. We were baffled as there had been no falls or accidents to cause this. They prescribed glasses to help with the headaches. Two days later, we had the paediatric appointment where the doctor there was incredible. He ran various tests and decided to schedule an MRI.
Following the scan, on the morning of 22 December, we received an urgent call around 6 a.m. asking us to bring Rosie to the hospital immediately because her brain was compressed. Although I work in the NHS, I’m no medical expert, but I quickly went into “clinical mode” and said, “Okay, we’ll sort this out.”
That’s when they told us the devastating news – Rosie had a 6cm brain tumour.
I couldn’t believe it. After just one scan and no blood tests, I thought they must be wrong. As professional and kind as they were, the reality of the situation and what they were telling me were difficult to grasp.
Later that day, they did another scan and blood tests before telling us to go straight to Alder Hey Children’s Hospital. We spent eight days there and made it home just in time for Christmas.
Rosie had a biopsy on 27 December to determine the type of the tumour. After the procedure, she developed weakness on her left side, which doctors had warned us could happen, but it didn’t go away, so that was concerning. The hardest part was seeing Rosie unable to walk properly after the biopsy. It felt like everything changed overnight.
Each week was a waiting game. There were phone calls and hospital visits. Some results came back, others didn’t. At first, they hoped it was something treatable and low-grade. When the results came back at the end of January, they confirmed the tumour was a paediatric bithalamic glioma containing a rare genetic abnormality – an aggressive and inoperable tumour due to its location, with a prognosis of nine to twelve months.
I think, in that moment, I was still in denial. Apart from the pain, Rosie was just a normal little girl. When the pain wasn’t there, she was herself, full of attitude and life. Telling the family about the diagnosis was more difficult than hearing it myself.
The pathology department at Alder Hey had only ever seen three other cases of Rosie’s tumour before, making it an ultra-rare diagnosis
There’s also very little information online, just a few cases in America, Canada, and Australia. So, while it’s known, it’s incredibly rare in children.
Initially, the doctors weren’t sure whether to begin chemotherapy straight away or add radiotherapy, as they weren’t sure how either treatment would affect Rosie’s developing brain. However, due to the tumour’s aggression, they decided to move forward with both. We just said, “Do whatever you need to do.” The medical team has been incredible, and Rosie, how she’s coped, is nothing short of amazing.
On 26 February, Rosie started radiotherapy and chemotherapy at The Christie Hospital in Manchester. She takes oral chemotherapy every day, and her radiotherapy is Monday to Friday under general anaesthetic. She also takes antibiotics, steroids, anti-sickness medication, and omeprazole. There’s a lot to manage, and the steroids affect her stomach, so it’s a constant balancing act. But apart from the oral chemo, she handles everything in tablet form like a trooper. She’s truly remarkable.
Getting Rosie to take her medication, especially when it tastes awful, has been a struggle so my brother and sister-in-law suggested a reward jar. Every time Rosie takes her medicine, she puts a star in it. Then, every Friday, after a week of radiotherapy, she gets a little treat. She’s so excited to add stars each day, and she’s been consistent with taking her tablets.
The first two weeks of her radiotherapy, she bounced back quickly after anaesthetic. But now, she’s more tired, and the side effects, like hair loss and swelling from the steroids, have kicked in. Her head pain has eased, though, which is a good sign. It’s only a temporary fix, but we won’t know for sure until the next scan. We still can’t leave her unattended, but there’s definitely been some improvement.
The hospital warned us this treatment might not work forever but I’m still holding onto hope.
Most similar cases haven’t outlived their prognosis, but why can’t Rosie be the exception? The consultant at The Christie told us that if the treatment works, it could extend her life beyond what they expect. Maybe Rosie will go down in history for it. That’s what I’m clinging to. We’re already planning her 18th birthday celebrations, where her consultant can also celebrate this amazing feat with us. That’s the vision.
The hardest part of this journey isn’t the prognosis because I’m still in denial about that, and Rosie’s doing okay. It’s the exhaustion and being far away from home, away from family, and away from Charlie. The medication has been tough to manage. Seeing Rosie in pain and not being able to help her has been heart-wrenching. She was on strong pain relief before this, but now her stomach is upset, and she’s barely sleeping. It’s been awful.
For Charlie, it’s been tough too. We’re trying to keep life as normal as possible for him. Routine is important. He’s not with us much, but we FaceTime him twice a day. He’s being well looked after, but it’s hard. He doesn’t like being apart from us, and we miss him terribly.
Once Rosie finishes radiotherapy, she’ll stop chemo on the same day. Then, she’ll get a break to recover. Six to eight weeks after that, she’ll have another scan. From there, we’ll go on to more chemotherapy, five days every four weeks. That treatment will be more aggressive, and we’re not sure how she’ll respond. But for now, we’re taking it one step at a time If everything goes to plan, that should be around the second week of April. If there are any delays due to bank holidays, infections, or fevers, it could shift. We’ve already had to go to the hospital because of a temperature spike, but it turned out fine. We’re just over halfway now, so fingers crossed.
We’re also focusing on raising awareness of brain tumours through this incredible charity.
At first, I didn’t want to do any media coverage. We’re a private family, and I wasn’t comfortable with the idea. But if sharing our story can raise awareness or connect us with someone who can help Rosie, then it was worth it. It wasn’t an easy decision, but I’m glad we did because the support we’ve received has been overwhelming. If we can help someone else going through this, we’ll do everything we can.
Rosie's tumour is so rare, and maybe someone out there has the knowledge or insight that could help. Or perhaps her story will inspire a breakthrough for future families facing similar battles. Her biopsies and blood tests might even lead to something groundbreaking. I don’t want to say the word 'cure,' but I truly hope for it. To anyone going through something like this, I urge you to hold onto hope. If Rosie weren’t doing as well as she is, I might feel differently. But she’s a fighter. As long as she’s fighting, so are we. We won’t give up, no matter how bleak things get, and neither should you.
Charlotte Hassall
April 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Rosie’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.