Tay Kurtul’s brain tumour was initially dismissed as exhaustion from his after-school activities but the lad’s parents were soon about to discover the harrowing reality
A six-year-old boy died months after experts dismissed his brain tumour as tiredness due to his after-school clubs.
Tay Kurtul, from Broughton Astley, Leicestershire, told his mum he was having vision problems in May 2023 so his mum Laura booked him in for an eye test. Experts put her concerns at ease but every parent’s worst nightmare was around the corner.
The youngster actually had the mass on his brain and he became one of around 52 children diagnosed with medulloblastoma in the UK that year. It is the second most common brain tumour in children, but far rarer in adults. Less than one year later, Tay has died despite undergoing radiotherapy and chemotherapy.
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Recalling the diagnosis, the mum, who is a self-employed laser specialist, said: “My husband, Toygun, and I were told the unimaginable – every parent’s worst nightmare – that they had found a mass in Tay’s brain. I remember not being able to feel my legs when we were told the heart-shattering news and the paediatrician’s voice seemed so far away. It felt as though it was just me in the room and I was screaming inside, but totally numb on the outside, although shaking with fear. It was a moment which will haunt me forever.”
Tay’s first symptom – his blurred vision – happened in May 2023. Laura continued: “I picked Tay up from school and on the way home he said ‘mummy, sometimes when I look at things they go blurry’. Then, during football training, Tay ran over to me and said he had a headache, which was surprising as he’d never complained of one before.
“I told him to sit and have a rest and a drink. Five minutes later, Tay was off to join in with the team again. But since that first headache, as the days went on, Tay started to show more concerning symptoms like waking up some mornings feeling sick and having a tummy ache.
“He could also be quite emotional and felt tired even after a full night’s sleep. He just wasn’t himself. I started to question whether he was taking on too much with all his after school clubs, play dates etc. Maybe he was just exhausted and needed a break from all his activities?”
Soon after his diagnosis in May 2023, Tay underwent a seven-hour operation to remove 99% of the tumour but following the surgery, he suffered from posterior fossa syndrome (PFS) – a collection of neurological symptoms that can occur from surgery of this nature. Tay was unable to sit up, walk or eat and he had visual problems and lost the ability to speak. Radiotherapy and chemotherapy failed to stop the tumour from progressing and Tay died on February 9, 2024.
Now, grieving Laura wants to raise awareness of the symptoms of brain tumours after she had thought her son was just exhausted. Laura went on: “After an impossible decision as parents, we decided to stop all chemotherapy… as the toxicity going directly into his brain was making Tay so poorly, resulting in early stages of dementia.
“We all knew the progression was taking over and it was no longer fair on Tay to keep fighting. His little body had been through too much. We will never find the words to describe how we feel after losing Tay.
“There is no fixing this pain and we now face an indescribable journey of survival. When you lose your child, the world becomes a different place and everything looks grey. Tay touched so many hearts with his joyful soul and he taught us the true meaning of love.”
Patrick Howlett, whose granddaughter Emily was Tay’s best friend, has now completed a 177-mile walking challenge to raise funds to help find a cure for brain tumours. The 65-year-old pub landlord, known as Paddy, led a team which raised £4,000 for Tay’s Tribe, a fundraising group under the umbrella of Brain Tumour Research.
“We are so grateful to Paddy for raising awareness and funds for better outcomes for children and adults diagnosed with brain tumours. Paddy is our lovely landlord, with Tay and Emily enjoying the sweetest friendship ever since they met in the reception class at Hallbrook Primary School in Broughton Astley,” Laura added.
“From baking cookies in her kitchen to building secret dens in his garden, their days together have been filled with giggles, silliness and the kind of joy only true childhood friends can bring – a simple, pure and beautiful bond, a little love story.”
Ashley McWilliams, community development manager at Brain Tumour Research, said: “We are deeply grateful to Paddy, Mary and Tim and everyone supporting Tay’s Tribe for their incredible efforts. Our Centres of Excellence bring together world-class researchers who are committed to understanding the complexities of brain tumours and developing more effective treatments.
“Every pound raised helps us sustain this critical research and brings us closer to finding a cure. Without increased investment, we risk losing the momentum we’ve built in uncovering the breakthroughs patients and families so desperately need.”