Freya from south east London was just two and a half when she was diagnosed with a pilocytic astrocytoma in September 2019 after her parents noticed an issue with her balance. Following debulking surgery and three failed cycles of chemotherapy, Freya still managed to start school. Now on a two-year trial treatment, Freya is due to celebrate her eighth birthday in June. Her dad, Nicholas, is campaigning with Brain Tumour Research to raise awareness of underfunding in research into the disease.
Nicholas tells Freya’s story…
Freya has a brain tumour on the cerebellum. She has a pilocytic astrocytoma, which is a low-grade tumour. She was diagnosed after me and her mum, Jo, noticed Freya was struggling with her balance.
Before she learned to walk, she never really did the cruising stage that toddlers do, holding on to furniture around her. We first noticed around January 2019 and thought she was developing slower than we’d experienced with her sister, Summer, who is two years older.
Freya also had a squint in her left eye and her gait was slightly off. Standing, she’d wobble, and she was unstable when she did walk. In August, we took Freya to a physio and GP who agreed it could be developmental. As a precaution, they requested an MRI scan of Freya’s head.
Although we knew something wasn’t right, we never imagined the cause was a brain tumour.
I remember getting the call from Freya’s Mum, Jo, saying Freya had a brain tumour. I told my manager I needed to go home and phoned my mum on the bus journey home. It’s a memory that has stuck with me so vividly. I was shocked and didn’t know what it meant for Freya. Jo and I had lots of questions but didn’t yet have any answers.
Freya was rushed to Great Ormand Street Hospital (GOSH). She had surgery to debulk the mass; its diffused shape was likened to a Christmas tree meaning not much could be removed safely. Even though we were told it was low-grade, they started Freya on chemotherapy weeks after the operation.
She had two different drugs initially, carboplatin and vincristine, one of which made her incredibly sick. It was tough for her, but she managed this for eighteen months before a break. Treatment had no impact, and the tumour grew so she had a second cycle of chemo which was ineffective.
She managed to start school during this time, sometimes having long stints away from the classroom because of the side effects of chemotherapy which meant she often felt very sick, and she would have days off school or more hospital admissions.
The consultant told us about the trial medication called Tovorafenib commonly known as Day101 which is in clinical trial at GOSH which Freya is nine months into. She is given drugs which are inhibitors to stop the tumour from growing. The hope is these drugs come with significantly less side effects and therefore a lot kinder to patients like Freya, when compared to chemotherapy. They are more effective and much kinder. Due to three failed treatments, she matched the criteria and will be on the trial for a total of two years.
It was almost like, wow, my child must really suffer before they qualify for potential life-prolonging treatment.
Freya has responded positively during her time on the trial, with a 25% reduction in her tumour size recorded in the first six months. While there have been some side effects, we remain hopeful for continued progress. Her experience highlights the urgent need for access to a wider range of treatments beyond the current NHS standard of care.
Despite everything Freya has faced, in February this year she learned to ski which was amazing to watch. We’re taking each step as it comes. The consultant reminded us that it’s not about living or dying, it’s about quality of life and Freya is able to lead a relatively normal life.
If anything, its’s the treatment rather than the tumour itself, which causes side effects.
Academically she’s on par with her peers and she is keen to participate in anything they do, although she does get tired easily.
It’s important that we continue to shed light on the topic of brain tumours as I feel it’s a disease that isn’t talked about when compared to other cancers, yet brain tumours kill more children and adults under the age of 40 than any other cancer.
This year I ran in the TCS London Marathon to raise money for Brain Tumour Research. I found running in my late 20s and I’m now in my mid 40s. I wanted to push myself the way that Freya has pushed hard because of her diagnosis and share the difficulty of what she has been through, by running.
It was emotional from start to finish and I was struck by the noise and breadth of the crowd who showed to support all the runners. Although training took over my life for four months, it was definitely worth it and Freya has loved reading the messages of support on my giving page and asking how much we’ve raised for the charity.
Right now, Freya is receiving groundbreaking treatment – a reminder of how vital ongoing research is.
Charities like Brain Tumour Research give families hope, and I want more children to have that same chance.
But the fight isn't over. Freya, and so many other children like her, will need new treatments in the future.
No child should have to endure this. No family should have to watch their child fight this disease which is why I will continue to campaign for more investment in research into brain tumours.
Nicholas Dear
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 Freya’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