Ben, a patron of Shay’s Smiles, accompanied Shay’s family to the Brain Tumour Research Centre of Excellence at Queen Mary University of London (Queen Mary), ahead of the fifth anniversary of Shay’s death on 1 September, the beginning of Childhood Cancer Awareness Month.
Shay died from a glioblastoma brain tumour in 2020. A massive supporter of Chelsea FC, he idolised Ben, feeling a real connection with him because they both played for the same grassroots football club in Woburn near Milton Keynes – Woburn & Wavendon FC (previously known as Woburn Lions).
Shay’s mum Niki O’Dea Patel said: “Shay was massively into his football and arguably even more into supporting Chelsea. He was always overjoyed to be able to go and watch them play, so it’s really special remembering how delighted Shay was when his hero Ben joined Chelsea just a few weeks before he passed away.
“It meant so much to Shay’s dad, Deenu, and me when Ben agreed to become patron of Shay’s Smiles to help raise awareness. And just recently, we were blown away by Ben’s incredible donation of £25,000 to help fund the fight to find a cure.”
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Ben said: “I am proud to have joined Shay’s Smiles to be a patron a couple of years ago and to continue supporting their great work, especially knowing how much football and Chelsea meant to Shay, as well as sharing that connection through our grassroots football.
“Until I met Niki and Deenu, I wasn’t aware how tough the outlook was for brain tumour patients. It was shocking to discover that one in three children, who die of cancer, is killed by a brain tumour.”
Milton Keynes charity Shay’s Smiles, a Member Charity of Brain Tumour Research, in 2022, committed £143,657 to sponsor a PhD researcher at the Queen Mary research centre, over four years.
Yesterday, Niki, Deenu, their children Dylan, 16 and 13-year-old Jasmine, as well as Ben and his mum Sally Chilwell, and trustees of Shay’s Smiles, Julie Pappacoda and David Newton, were shown round the labs at Queen Mary by lead investigator and director of the Centre, Professor Silvia Marino, as well as Niamh Baker, the PhD researcher Shay’s Smiles is sponsoring. During their tour, they were able to learn more about how their funding is helping support scientists leading the way in research into aggressive brain tumours, including glioblastoma, which has an average survival prognosis of 12 to 18 months.
In May this year, Queen Mary announced a groundbreaking study which is bringing hope for patients with recurrent glioblastoma. This pioneering new technique, mimicking the human treatment process in implanted human glioblastoma models, has been able to accurately replicate how glioblastoma tumours recur and evolve after treatment.
Scientists at Queen Mary are also working to develop gentler, more effective therapies for childhood brain tumours, including medulloblastoma, ependymoma and diffuse midline glioma (commonly known as DIPG), for which current treatments are gruelling and can cause lifelong side effects and disabilities.
The Patel family also placed 58 tiles on the Wall of Hope honouring Shay and representing the more than £159,000 they have donated to date to fund research at Queen Mary, thanks to the amazing generosity of Shay Smiles’ supporters. They also witnessed the unveiling of a special plaque outside the labs dedicated to their beloved son and brother, acknowledging the significant contribution from Shay’s Smiles towards the research being conducted there.
Prof Marino said: “We were delighted to welcome Shay’s family again to Queen Mary to let them know how their funding is really helping us make advances towards better outcomes for brain tumour patients and specifically those diagnosed with glioblastoma.
“Our innovative approach not only furthers our understanding of the biology of glioblastoma recurrence but also opens the door to personalised medicine. By analysing the genetic and molecular changes in recurrent tumours, researchers may be able to identify patient-specific vulnerabilities. This means that in the future, treatments could be tailored to the unique characteristics of each patient's recurrent tumour, improving the chances of successful treatments when first-line therapy has failed.”
Dan Knowles, CEO of Brain Tumour Research, said: “We are indebted to Shay’s Smiles for their incredible contribution towards funding the vital research being conducted at Queen Mary University of London. The team of scientists there is carrying out game-changing research which we are hopeful will lead to significant improvements in the care brain tumour patients receive and ultimately, find a cure for brain tumours. Shay’s family should be truly proud of the legacy they are creating in his memory.”
To find out more about sponsoring a day of research, go to braintumourresearch.org/fundraise/sponsor-a-day.
5. Contributed
Researcher Niamh and Shay's parents Niki & Deenu receiving donation from Ben Chilwell. Credit: Brain Tumour Research Photo: Submitted