Millie Butler with her dad Conal (Image: Conal Butler/SWNS)
An 11-year-old schoolgirl was diagnosed with an extremely rare brain tumour, accounting for just 0.02% of brain tumours in children, after she began vomiting up to 16 times a day. Millie Butler had been experiencing headaches and nausea for several days when her father, Conal Butler, 36, was summoned to collect her from school on September 26, 2025, as she had started being sick.
Over the following few days, Millie continued to vomit up to 16 times daily and noticed that she could not see out of her peripheral vision. She was taken to St Peters Hospital, Chelsea, by paramedics.
Initially, doctors speculated that her symptoms might be stress-related, but an MRI scan the next day revealed a significant bleed on the brain.
Doctors suspected that Millie might have a brain tumour, but they needed to wait three weeks for the blood to be reabsorbed before they could fully determine what was causing the bleed. Millie remained in hospital for eight days under neurological observation before being discharged.
Just over a week later, Millie was urgently readmitted to St Peter’s Hospital via ambulance following another bout of vomiting. Doctors confirmed that the blood had dissipated, but she had a brain tumour that had grown since her last scan and required immediate removal.
Millie Butler with her dad Conal (Image: Conal Butler/SWNS)
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The estimated 50mm tumour was completely excised in a three-hour operation on October 22, and subsequent biopsy and additional tests identified it as a primary intracranial sarcoma dicer1 mutant.
Millie’s cancer is in the 0.02 per cent of brain tumours in children, according to her consultant, and dad Conal says « maybe one or two » people in the UK had it last year. Now, Millie is undergoing three rounds of chemotherapy followed by six weeks of proton beam therapy and a further four to six rounds of chemotherapy. She may also need further rounds later down the line.
Dad Conal, a full-time carer for Millie, from Cobham, Surrey, said: « All my strength comes from her. Millie’s been amazing.
« I just remember the thing that broke my heart the most was after her surgery when we found out it was cancer and she needed to go through treatment. She was sitting on the sofa after her treatment and said ‘I’m so much better, I can go back to school soon’.
« I told her she needed chemo and she took it so well. I’m convinced, and I can’t speak for anyone else’s kids, not many kids can handle it like her. »
Millie Butler was diagnosed with a brain tumour so rare it makes up 0.02% of all cancers (Image: Conal Butler/SWNS)
Conal was at work when Millie’s school rang to inform him she was feeling unwell on September 30, 2025. « I thought ah, you’ll be fine, » he said.
« I was thinking she wanted a day off school, which I feel terrible about now. She was vomiting a lot – 15 or 16 times over a couple of days.
« I said shall we go for a little walk around the block just to get out. We got about 50 yards down the road and she said she couldn’t see out of her peripheral vision. »
Conal dialled 999 straight away, but medics reported that Millie’s routine examinations were all showing normal results. Despite this, Conal insisted they transport her to A&E.
Conal recalled: « It was the worst news any parent can get, I suppose. They said towards the end of the meeting ‘we’re just going to do some extra tests to make sure there are no mutations, it’s very rare there are, but just in case we’ll do these tests’. »
Days later, Millie’s diagnosis was verified.
Conal explained: « Maybe one or two people in the UK last year had it. It’s 0.02 per cent of all brain tumours in children.
« It’s so rare her care plan is from America, Germany, Canada – all the top neurologists and oncologists are looking at her case. We have a meeting twice a week.
« There’s not enough data to go on to form a solid treatment plan because it’s so rare. Just before the first round of chemo the doctor called out and took me to a room and showed me scans taken before chemotherapy started that showed it had grown back already.
« He said it was not ideal, but it doesn’t change the plan other than the fact more surgery was needed to take it out. That was probably six weeks ago.
Millie Butler in hospital (Image: Conal Butler/SWNS)
« She’s had two rounds of chemo since. It’s shrunk to the point you can’t see it and she doesn’t need extra surgery now. »
Millie’s grandparents, Sue, 63, and Brian, 66, are now raising funds to enable her to visit a friend who has recently relocated to New Zealand – a special trip to mark completing her treatment in September. Conal stated: « She’s agreed to donate extra bone marrow and blood for research purposes. She’s thinking of other people all the time.
« She’s so kindhearted, she would give you her last penny. It’s so unfair this is happening to her. »
The GoFundMe can be found here.
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