A YOUNG girl has been left mute and unable to walk after “feeling off-balance during PE”.
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”.
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During her athletics training, she began to notice issues with her balance.
However, it wasn’t until a routine annual check-up at the optician that some unusual symptoms were detected.
The following day, she underwent a 10-hour operation to remove an apricot-sized brain tumour.
However, when she regained consciousness, she couldn’t open her eyes for the first 24 hours and had lost the ability to walk and talk.
The removal of the tumour “caused a shock in her cerebellum” – a vital component in the brain which plays a role in motor movement regulation and balance control.
This meant that when Amelie regained consciousness after the surgery, she was experiencing posterior fossa syndrome (PFS), a complication of surgery for medulloblastoma that can cause issues with communication, motor skills, and mood.
The 12-year-old was mute for three weeks, mainly communicating through hand gestures and passing the time by listening to the Tracy Beaker audiobook series.
When she did regain some of her speech, it sounded “robotic.”
Amelie then endured six weeks of “horrific” radiotherapy, which caused her to lose her hair.
This was followed by nine months of chemotherapy and rehabilitation sessions, including physiotherapy to help her regain her movement and strength, as she spent about a year in a wheelchair in total.
Since finishing her treatment, Amelie has started secondary school for the first time on a reduced timetable as she continues to recover.
With hope and determination, she is gradually 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.
She has had to relearn how to do everything again
Lydia Williams
“I felt like my body was a shell and I was trying to call out to my family, but my mouth wouldn’t move.
“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.”
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’.
“I had a look and they were tremoring, flickering, and I said: ‘What’s that?’
He replied: ‘I’m not sure, but I think you need to take her to the GP’.”
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.
‘Is she going to die?’
Lydia explained: “I remember the doctor saying to me ‘Is there anything you need to know? Is there anything you want to ask us?’
Lydian asked: “Is she going to die?”
The doctor replied: “We don’t know.”
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 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.
“Ever since then, she has had to relearn how to do everything again.”
Amelie explained that she initially felt “trapped” after the surgery. Although she wanted to cry, she held back her tears, determined to stay positive.
It took Amelie three weeks to make her first sound again, and after two months, she began using words to communicate.
‘MOUNTAIN TO CLIMB’
She added: “I couldn’t talk properly like I am talking now, I was just like a robot talking, and my parents said ‘You had a tumour and the doctors had to take it out, you had cancer’.”
Although the treatment felt like “a mountain to climb,” Amelie said her family, friends, dog Dottie and the digital support groups from Young Lives vs Cancer helped her through it.
She also enjoyed visiting the two ducklings that hatched in the hospital school.
“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.
“We used to talk about when we could walk the dog again and when we could go and lay on the field in the sunshine and smell the fresh grass – all those things that you just miss when you’re in that artificial environment.”
Gradually, with speech and language sessions along with physiotherapy, Amelie began to regain her movement and ability to talk.
Her little brother, Arlo, 10, even assisted her with some exercises at home and helped take care of her.
Since finishing her treatment in March, Amelie has continued her rehabilitation and started secondary school.
She’s also rejoined local clubs she used to attend and has been teaching herself to sing and beatbox again.
Amelie said artwork has been essential to her recovery and she would strongly advise other children with cancer to talk to “somebody that’s going through a similar thing to you” and to hold on to “hope”.
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.”
Lydia added: “I think cancer scares everybody, children and adults, and it carries with it a lot of negative connotations… but now, being a family that’s gone through something like that, I also feel that cancer isn’t the end.”
Amelie and her family were supported by the charity Young Lives vs Cancer. To find out more, visit: www.younglivesvscancer.org.uk.
What is Medulloblastoma
Medulloblastoma is a cancerous brain tumour that starts in the lower back part of the brain.
This part of the brain is called the cerebellum. It is involved in muscle coordination, balance and movement.
Medulloblastoma can happen at any age, but most often occurs in young children.
Though medulloblastoma is rare, it’s the most common cancerous brain tumour in children.
Medulloblastoma symptoms happen when the tumour grows or causes pressure to build up in the brain.
They can begin before the cancer is diagnosed and may continue for months or years even after treatment.
Signs and symptoms of medulloblastoma may include:
- Dizziness
- Double vision
- Headaches
- Nausea
- Poor coordination
- Tiredness
- Unsteady walk
- Vomiting
Source: Mayoclinic
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