Honey, from Birmingham, was just 10 when she was diagnosed with a cerebellopontine angle epidermoid cyst in 2019, after years of leg pain were repeatedly dismissed as growing pains. Now 16, she’s awaiting her GCSE results, due just days after undergoing a second operation to reduce the tumour. Her first surgery in 2023 was cut short after she suffered a bleed on the brain, but Honey’s determination to keep moving forward continues to inspire all those around her.
Here is her story as told by her mum, Julie…
In 2015, when Honey was six, she started to talk about a pain in her leg to the point where it caused her to limp. I kept taking her to the GP and every time they said it was normal growing pains.
This continued for years, and we felt as if we were being dismissed at every appointment, with no resolution and they kept saying it was normal.
There was something of my mother’s instinct that was telling me there was something else going on with Honey’s health.
When Honey was nine, after years of going back and forth to the GP, we saw a locum doctor at the surgery who made a referral to Birmingham Children’s Hospital. They tested her reflexes which were faster than average and Honey was passed over to neurology.
Honey had a full body MRI scan and that’s when they saw a tumour on her brain.
We were shocked. Honey was experiencing a pain in her legs; the last thing we thought we’d be told was that she had a brain tumour and treatment in the future could mean having an operation.
Although we’d gone in for the pain in her legs, the revelation of the brain tumour and pain in Honey’s legs were and remain unrelated.
She attended school and lived a normal life for a young girl growing up. For five years, Honey had stable scans until March 2023 when we were told the tumour had started to grow, diffused around the brain stem.
If left untreated it could cause loss of hearing, vision, speech and movement of the face.
Honey had more tests which revealed the tumour had impacted the hearing in her left ear. The hearing loss had been gradual and minor, meaning Honey would not have noticed in her day-to-day.
In November, Honey went in for surgery at Birmingham Children's Hospital. As her parents, my husband Simon and I signed to give our consent for the operation. We spoke everything through with Honey, who had attended every appointment with us, and she understood why she was having the operation.
We’d signed our consent and knew the risks. The biggest one for Honey was the risk of having a stroke. We were allowed to be with her as she was put to sleep and then we sat on the ward next to an empty space waiting for her return from the operating theatre.
After a 12-hour craniotomy, the surgeon came to see us and said they had stopped the procedure due to Honey suffering a bleed on the brain and her speech was likely affected. I felt sick with worry.
For an hour afterwards, we waited while Honey had a CT scan, and eventually we were taken to see her in the recovery room. She was swollen, with bruised lips, and her body was covered in tiny pinpricks, she looked as if she’d been in an accident. We’d been told to prepare ourselves for what we might see, but no amount of warning could have readied me for that moment.
She lost eight pounds in weight because she couldn’t eat, and she could communicate with one-worded responses which returned to normal after a few days.
She was diagnosed with a cerebellopontine angle epidermoid cyst which is a rare type of brain tumour that grows very slowly. We were told she likely developed the tumour in the womb, and I’ve since come to understand that these tumours make up less than 1% of all brain tumours diagnoses.
Honey was in Year 10 at John Henry Newman Catholic College. She missed nine weeks of school whilst she recovered, and despite being a little hesitant to return because they had to shave some of her hair, she went from not looking at her scar, to wearing her hair up and showing her wound.
By the time she returned to her education in January 2024, she was due to sit her mock GCSEs and was failing in every subject. We paired her with a tutor for maths and Honey worked hard on her studies in and out of school time to bring her up to the same level as her peers.
For part of her English GCSE coursework, she wrote and presented about a topic of her choice: brain tumours.
Using her own diagnosis to speak passionately to a classroom of people who ended up in tears, they were moved by her speech.
She wanted to help people understand that a brain tumour diagnosis doesn’t always mean cancer, which is often the misconception and something we’ve certainly come to realise.
In July, she attended her school leavers prom and on 21 August, is due to pick up her GCSE results. However, just over a week before, Honey is due to have a second operation on 13 August, a continuation of her first surgery which was halted due to the bleed on her brain.
Realistically, Honey will be in hospital for a week after the operation and we anticipate she will be recovering and bed-bound for two weeks after that, so she won’t get to experience the buzz of being around her friends all collecting their results in school.
The plan is for Honey to begin her T Level in early years in education at University College Birmingham a month or so after the course starts. Although she could delay by a year, she’s already shown she can catch up and doesn’t want to fall that far behind her friends. She chose this course because it’s a subject she became passionate about during her time in the children’s hospital. She often spoke about the young children and babies who were there and probably didn’t even know why. Honey told us she felt lucky to understand what was happening to her. She has always been very empathetic, and after seeing other young people in hospital, she wants to pursue a career where she can have a positive impact on their lives.
Watching how Honey has handled her diagnosis, overcome the physical side effects, and navigated growing up with the disease alongside school life has made me incredibly proud.
I expect the day she receives her exam results will be an emotional one for all of us.
In 2023, I took part in the 10,000 Steps a Day in February challenge in aid of Brain Tumour Research, as a way of raising awareness and helping to fund vital research into brain tumours.
There are more than 100 types of brain tumour, and when people hear the words ‘brain tumour’, they often imagine the worst. By supporting this charity, our family hopes to play a small part in changing that. We want to help people understand more about this disease.
It’s heartbreaking that brain tumours kill more children and adults under 40 than any other cancer, yet research into them remains underfunded. That’s why we want to keep doing more and we hope others will feel inspired to join us in making a difference.
Julie Ibbitson
July 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 Honey’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.
