Shayen Patel, known to all as Shay, died on September 1, 2020 aged just 13 - less than two years after being diagnosed with a glioblastoma multiforme (GBM) brain tumour.
His family had taken Shay abroad for pioneering treatments, after he had exhausted all options available in the UK, but nothing could save him.
Now, the family say they are taking comfort in the fact that schools and businesses across Bedfordshire and Milton Keynes are remembering him on the date of his birthday - Friday, January 21.
Among the schools ‘Wearing it Blue’ to honour Shay, a talented footballer and huge fan of Chelsea FC, is Bedford Modern, attended by many of Shay’s friends and also by his younger brother Dylan.
And Redborne Upper School & Community College, attended by a number of Shay’s close friends, also joined in - opting to wear blue today (January 20) as the school is closed tomorrow.
Shay’s mum Niki O’Dea-Patel from Woburn Sands said: “It is lovely that schools and businesses, including my husband Deenu’s company ID Medical, are marking Shay’s birthday in this way. It’s such a positive thing after what would have been his 14th birthday last year fell during lockdown so we could barely do anything to mark the day.
“Like most children, Shay loved celebrating his birthday with friends and family – especially if it meant going bowling and eating out! On his 13th birthday and the last one we had with Shay, we took him along with a group of his close friends – all football-mad – to a Chelsea game, which he absolutely loved.”
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically just one per cent of the national spend on cancer research has been allocated to this devastating disease.
While he was alive, Shay, who wanted to help other families with children diagnosed with life-threatening illnesses, began planning to set up Shay’s Smiles along with his family.
A Member Charity of Milton Keynes-based national charity, Brain Tumour Research, Shay’s Smiles is helping children and their families access specialist doctors and healthcare facilities while funding vital research into the type of brain tumour which killed Shay at Brain Tumour Research’s Centre of Excellence within Queen Mary University of London (Queen Mary).
Niki added: “During Shay’s journey, we met so many patients, including children, with GBM, many of whom have since passed. There will be no change and no hope without more funding for research. We can’t let another 10 years go by, destroying families and taking more and more young children from their parents.”