A mum says she knew something wasn't right with her three-year-old when he started having 'funny spells' and his eyes would roll while he slept.
Sarah Cheung, from Aigburth, first noticed her youngest son Lloyd Cheung's symptoms at the beginning of September 2021.
Lloyd's ‘funny spells’ involved him saying “falling mummy” and throwing up.
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Afterwards, Lloyd would fall asleep and his head would tilt to the left while his eyes would roll.
Concerned, Sarah took her son to the doctor, who said they would speak to someone in Alder Hey. Within two days an appointment at the children's hospital was booked for the middle of October.
In the meantime, Sarah made two trips to A&E with Lloyd, but he was sent home both times.
On October 15 he was sent for CT and MRI scans at Alder Hey, which revealed a brain tumour.
Subsequent surgery revealed Lloyd had an atypical teratoid rhabdoid tumour (ATRT) – an aggressive and rare tumour of the central nervous system.
Charity Brain Tumour Research states ATRTs are most often diagnosed in infants and toddlers and can be described as “a malignant, fast-growing form of brain cancer”
Symptoms vary according to the location of the tumour and the age of the child, but the most commonly found are headaches, vomiting, loss of balance and changes in levels of activity.
It is a very difficult tumour to treat and three different universities across the UK are currently researching potential cures.
For now, Lloyd’s prognosis is difficult and there is no clear direction for his treatment.
The family hopes he will be suitable for a medical trial, but currently there are no such trials for his diagnosis.
For the next six weeks, Lloyd is undergoing proton therapy five days a week at The Christie in Manchester, as well as having chemotherapy every fortnight at Manchester Children’s Hospital.
As a result, Sarah is having to stay in a hotel in Manchester as she takes Lloyd back and forth between the two hospitals for treatment.
Lloyd’s cousin Tamsyn Hamilton has raised more than £5,000 to support Sarah the family with the financial burden of travel between medical centres, overnight stays and eating away from home.
She told the ECHO : “The prognosis is very, very difficult and there’s no clear way about treatment because it’s so rare. That’s the problem.
“Sarah is incredibly resilient and she’s incredibly upbeat. She thinks that having a positive attitude is the way forward. She’s been really strong.
“Lloyd is going through brutal treatment, but he’s adjusting amazingly, as children do.
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“There is a difficulty when he gets fever spikes. If he ever gets a fever at this stage, because his immune system is suppressed, he has to go straight to the hospital.
“But one of the very difficult things for Sarah is that she has two older children and they have to be taken care of in Liverpool, while she has to be in Manchester with her youngest. That’s really tough for a single parent.
“The family is stepping in to help. Friends and family are running 10km in Liverpool and London next month to rally around Lloyd and his family in a difficult time and the £5,000 that we wanted to raise to help the family has been achieved.”
After Lloyd’s treatment in Manchester has finished, he will return to Alder Hey to continue receiving chemotherapy until March.
Wanting to raise awareness of Lloyd’s very rare condition, Tamsyn added that Sarah has told parents to trust their judgement if they believe that their child is not well.
She said: “Sarah has also said ‘trust yourself – if you think that something is wrong with your child, something is wrong’.
“When something is seriously wrong, you tend to know – and she knew.”
Tamsyn will take part in the Run Aintree 10km on February 13. You can view her fundraiser and donate by clicking here .
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