Girl, 9, had tumour so large it distorted shape of her brain

Independent

24-04-2025

A child was diagnosed with a tumour so large it distorted the shape of her brain - with her mother now 'opening her eyes' to the importance of children 's eye tests.
When Sophie Evans's older daughter, Esmai, complained of seeing spots in January 2024, the concerned mother took the youngster to an optician near their home in Tean, close to Stoke-on-Trent. Initially, no issues were detected.
However, a year later, a frightening incident resembling a "mini seizure" prompted Evans to return to the opticians with Esmai.
This time, the advice was far more urgent: go straight to A&E. Subsequent tests revealed a shocking diagnosis - Esmai had a brain tumour, so large it was distorting the shape of her brain.
Following a successful operation to remove the tumour, Esmai is now undergoing radiotherapy. This ordeal has been a stark reminder for Evans about the importance of children's eye health.
She now hopes to share her experience to encourage other parents to prioritise their children's vision and seek prompt medical attention if any concerns arise. Evans's vigilance ultimately saved her daughter's life, proving that sometimes, a seemingly small symptom can mask a serious underlying condition.
'I don't think anybody really thinks to take their children for eye tests,' Sophie told PA Real Life.
'I don't think I would have done unless she said to me she was seeing spots.
'Regular eye checks should be a very normal thing. It should be as normal as going to the hairdressers or going to see a dentist.'
In January 2024, Esmai started telling her mum that she was seeing spots.
Sophie said: 'I took her to the opticians, and they found that everything was fine.'
Throughout 2024, Sophie recalled, Esmai would occasionally see spots, but it did not seem serious.
'We all have it: you rub your eye, or turn from one light to another, and you see spots,' Sophie said.
'Then at one point, she was walking towards me and her pupils went really small and she just zoned out.
'Then they suddenly shot really big, and she went, 'oh, sorry Mom, I just saw spots again.'
'To me, that looked like a mini seizure.'
Sophie took Esmai back to the opticians in January 2025.
They identified swelling at the back of Esmai's eyes and on her optic nerves, and said she should go to A&E immediately.
An MRI scan a few days later confirmed that Esmai had a 'considerable' ependymoma growing in her brain.
'The tumour had actually grown so big over this time that the central line (of her brain) had shifted and curved,' Sophie said.
'They're quite astounded that she didn't have any other difficulties.
'No headaches, no weight loss, no sickness, no learning troubles – nothing.
'She should have had something wrong.'
As a parent, Sophie said: 'The first thing you think is that your child is going to die.
'I don't think there are any words to describe (that feeling).'
In February, Esmai underwent a seven-hour-long surgery to remove the tumour at Alder Hey Children's Hospital in Liverpool, which went 'brilliantly'.
She has now begun an intensive programme of radiotherapy at the Proton Beam Therapy Centre in Manchester.
This involves being 'pinned' to a bed by a special mask before a high-energy beam of protons is sent through her brain, targeting any remaining cancerous cells.
According to a recent study published by the Society for Neuro-Oncology, the kind of ependymoma that Esmai has comes with a roughly 35% chance of relapse within 10 years.
Sophie explained: 'With cancer, whether you get free of it or not, it never leaves you, because you just don't know if it's ever going to come back.
'If it does, because of the strength and the type, it will be harder to get rid of.
'We might not be so lucky next time.'
Esmai has been responding to treatment well, but Sophie is still worried about the effect this experience may have on her.
'She's blocked a lot of it out,' Sophie explained.
'But she does get very anxious now. She'll say to me, 'I'm feeling worried, and I don't really know why.'
'It'll happen at random times of the day, maybe when she's having fun or something, she'll just suddenly go a little bit withdrawn.'
Sophie said Esmai 'loves outdoor things' and is 'very girly'.
She added: 'She's quite ahead of her time.
'I think she's desperate to be older than what she is. She quite fancies herself as a teenager.'
Esmai will be undergoing treatment on her eighth birthday, May 12.
Sophie, Esmai, and Sophie's younger daughter Grace, aged two, have temporarily moved into hospital accommodation in Manchester while Esmai's treatment is ongoing.
'It's a little bit difficult with having a two-year-old. She thinks she's on holiday – she's having a great time,' Sophie said.
As a hairdresser, being away from home for the duration of Esmai's treatment means that Sophie cannot work.
A friend and neighbour, Lisa, has raised more than £3,000 through a GoFundMe to support Sophie while Esmai is undergoing treatment.
Sophie said she initially found it 'embarrassing' to share Esmai's story on GoFundMe, and only allowed Lisa to post it on the condition that it highlighted the importance of eye tests for children.
Now, she said, she is 'grateful' for the opportunity to give Esmai some 'happy experiences' while her treatment continues.
'I've been able to take her out to the Sea Life Centre and bowling, and without it I wouldn't have been able to do that,' she said.
'It means it's not going to be just bad memories.'