Family honours beloved son on 19th birthday with £220,000 investment in brain tumour research
The family of a Bedfordshire boy lost to a deadly brain tumour, aged just 13, is marking what would have been his 19th birthday by announcing a significant new investment in research, aimed at finding a cure for childhood brain tumours.
Shay Patel, from Woburn Sands, passed away from a glioblastoma – a tumour that would now likely be classified within the group of paediatric-type diffuse high-grade gliomas (PDHGG), just 22 months after his diagnosis.
In his memory, his family created Shay’s Smiles, a Member Charity of Brain Tumour Research, to support families of children diagnosed with PDHGG and to fund research to bring about better outcomes for children and young adults with brain tumours.
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. One in three children who die each year of cancer is killed by a brain tumour.
Shay’s Smiles is investing a total of £221,111, funding a three-year target validation study at the Brain Tumour Research Centre of Excellence at the Institute of Cancer Research (ICR) in Sutton, Surrey, including specialist researchers and research materials. The pioneering team at ICR is working to identify and test new treatment targets for PDHGGs using cutting-edge genetic techniques.
The announcement comes as the team reaches a pivotal stage in its work – identifying the most promising new targets and treatment options to be put forward for rapid pre-clinical testing, with the goal of progressing towards a clinical trial.
Shay’s mum, Niki O’Dea-Patel, said: “Nothing prepares you for losing your child. Shay was robbed of his future and of being with us. Every birthday without him is heartbreaking, but each passing year strengthens our resolve to help other families facing the horror of a paediatric-type diffuse high-grade glioma, from which two-year survival is less than 10%.
“Despite trying everything – including exploring treatment options in the United States and Germany – we were told there was nothing more that could be done. No family should ever hear the words: ‘there is no more treatment available for your child’.
“As well as supporting families and vital research, we campaign tirelessly for the Government to take brain tumours more seriously and invest far more into research for a disease that takes more children’s lives than leukaemia.”
Dan Knowles, chief executive officer at Brain Tumour Research, said: “Our thoughts are with the Patel family as they prepare to mark Shay’s 19th birthday without him.
“We are profoundly grateful to Shay’s Smiles and to all our Member Charities who support the groundbreaking work taking place at our Centres of Excellence. This remarkable contribution of more than £220,000 will help accelerate the vital work at the ICR, bringing us closer to clinical trials for kinder and more effective treatments for children diagnosed with paediatric-type diffuse gliomas.
“I urge everyone to donate to help fund life-saving research being carried out at our Centres of Excellence. Every pound raised sustains critical scientific progress, bringing much-needed hope to the thousands of families affected by brain tumours, while influencing the Government to invest more into research nationally.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
To donate, go to www.braintumourresearch.org/donate or www.shayssmiles.org/shop