Girl, 12, left mute and unable to walk after eye test found cancerous brain tumour says her body became ‘a shell’

A sporty schoolgirl who loved to sing and beatbox was left mute and unable to walk after surgeons removed a cancerous brain tumour found during a routine eye test.

Lydia Williams’ daughter Amelie, 12, who lives near Wells in Somerset, was diagnosed with medulloblastoma, aged 11, after she had an eye check-up in March 2023 and the optician noticed her eyes “flickering”.

The following day, she underwent a 10-hour operation to remove the apricot-sized brain tumour – but when she regained consciousness, she could not open her eyes for the first 24 hours, and she had lost the ability to walk and talk.

She was mute for three weeks, meaning she predominantly communicated through hand gestures and passed the time listening to the Tracy Beaker audiobook series, and when she did regain some of her speech it sounded “robotic”.

Since finishing her treatment, Amelie has started secondary school for the first time on a reduced timetable as she continues to recover – and with “hope” and determination, she is slowly re-learning her sporting, singing and beatboxing skills.

“(After my surgery) I couldn’t see anyone. I could sense they were there and I could hear them… but I couldn’t respond,” Amelie told PA Real Life.

“When I lost my voice, it was really hard because normally I sing to express myself. If I feel sad, then I sing a song to myself.

“Now I’m going back to school and I’m doing the same clubs that I used to – going back to my gymnastics, going back to my swimming, and I’m just working on swimming techniques.”

During her athletics training, she started to notice issues with her balance – but it was not until a routine annual check-up at the opticians on March 23 2023 that some unusual symptoms were detected.

Lydia, a 43-year-old teacher, said: “The optician said to me: ‘Just have a little look at this Mum, her eyes are doing something’.

Amelie had a GP appointment later that day, which led to a referral to Royal United Hospital in Bath, where she underwent a series of blood tests and an MRI.

Once the scan was completed, doctors requested to speak with Lydia – and this is when she received the news that Amelie had a brain tumour, which was later confirmed as stage 4 medulloblastoma.

Lydia called her 50-year-old husband Chris, a yacht captain who was away at sea in Italy at the time, to inform him of the news, and Amelie was taken to Bristol Royal Infirmary via ambulance.

She underwent a successful 10-hour operation to remove the apricot-sized brain tumour the following day.

This meant that when Amelie regained consciousness after the surgery, she was experiencing posterior fossa syndrome (PFS) – a complication of surgery for medulloblastoma, which can cause problems with communication, motor skills and mood.

“She wasn’t able to talk, she wasn’t able to move, she didn’t open her eyes for the first 24 hours – she was breathing on her own, that was about it,” Lydia said.

Amelie explained that she felt “trapped” initially after the surgery, and although she wanted to cry, she held back her tears as she wanted to stay positive.

It took three weeks for Amelie to make her first sound again, and after two months she was beginning to use words to communicate.

After a six-week break post-surgery, Amelie then faced six weeks of radiotherapy, which caused sickness and hair loss, followed by nine months of “relentless” chemotherapy.

“It was agony for her, agony for me every day, and I would constantly say to her: ‘Well, we’re going to go and see the ducks in a minute’, just to try and get her through that,” Lydia said.

Gradually, with speech and language sessions and physio, Amelie started to regain her movement and her ability to talk – and her little brother Arlo, 10, even helped her with some exercises at home and took care of her.

Since finishing her treatment in March this year, Amelie has continued with her rehabilitation sessions and has started secondary school, she is participating in the local clubs she used to attend, and she has been teaching herself to sing and beatbox again.

She said: “I was scared but I would always tell myself: ‘Hey, it’s all going to be okay. You’re going to get better and go out of the hospital and be able to do the stuff that you did before’.

“I’d like to shout out Caroline, Alban, Tia, Boheme, Aisha, and Lily, and a special thanks to my best friend Olive who has been by my side since the beginning.”

Amelie and her family were supported by the charity Young Lives vs Cancer. To find out more, visit: www.younglivesvscancer.org.uk.