A six-year-old boy was diagnosed with an aggressive brain cancer when he started getting headaches after playing football.
Taylan Kurtul was eventually left unable to sit, walk, talk or eat unaided after he was found to have medulloblastoma. It came after a GP referred Taylan to the Leicester Royal Infirmary when he struggled with basic balance tests – and scans then revealed the tumour.
Taylan, then five, had a seven-hour operation to de-bulk the mass and is currently undergoing proton beam therapy with chemo to follow. His aunt, Beckie Chamberlain, Laura’s sister, set up a crowdfunding page to allow his parents to take time off work to spend with Taylan, of Broughton Astley, Leicester.
The family has also pledged their support to the Brain Tumour Research charity’s petition to increase research funding. It must reach 100,000 signatures, in the hope of prompting a parliamentary debate. The closes at the end of October.
Beckie lives in New South Wales, Australia, with her husband and three children. She said: “Laura rang me out of the blue one evening, and said ‘we’ve got really bad news, Taylan’s got a tumour on his brain’.
“It was an absolute shock and utterly devastating. ‘I dropped everything, got on a plane and managed to see Taylan before his operation.”
The surgeons were able to remove the majority of the tumour but when Taylan came round it was evident he was suffering from posterior fossa syndrome (PFS). He was unable to sit, walk, or eat. He also had vision problems and completely lost his ability to speak.
Results from analysing Taylan’s tumour then confirmed it was the most aggressive type, group 3. Beckie, 40, added: “It’s every parent’s worst nightmare to hear the words ‘your son has brain cancer’, but to hear the type also has a terrible prognosis is just life-shattering.
”The news is still so raw, I feel like it truly hasn’t sunk in and in some ways, I doubt it ever will. It’s simply a living nightmare.
“It’s all so much for a little boy to take. Laura and Toygun have told Taylan he has a ‘naughty lump’ in his head that the doctors are trying to get rid of. ‘He knows the treatment is there to make him strong again and to stop it coming back.
”There’s no point frightening him with any more information than that; it’s more important to stay as positive as possible around him while he is fighting so hard.”
Taylan, who is an only child, has had to re-learn to sit, walk, drink and eat. After months of physiotherapy sessions his mobility, vision and speech gradually started improving. He is now able to walk unaided, and talk.
Beckie added: “Taylan is such a brave and resilient little boy. It just makes you realise, nothing else matters in life except the people you love. ‘All the little things you worry about every day, really aren’t important.”
On the fundraising page, Beckie added: “It’s a long road ahead for Taylan, Laura and Toygun and with this comes huge financial difficulty.
”I set up a fundraising page, because we don’t know what the future holds. We are praying Taylan responds well to the radiotherapy and chemotherapy, but want to be ready to start funding any private treatments here or abroad, which Taylan may need to beat this.”
Brain Tumour Research is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
Matthew Price, community development manager at Brain Tumour Research, said: “We are so sorry to hear about Taylan’s diagnosis, and wish him all the best for his ongoing and upcoming treatment. Brain tumours kill more children than leukaemia, so we’re grateful to Beckie and the rest of Taylan’s family for supporting our petition and helping to raise awareness.
“For too long governments have put brain tumours on the ‘too difficult to think about’ pile. Five years after the Government announced £40 million for brain cancer research, less than £11 million has been spent. Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.
“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”
