The family of a teenager lost to brain cancer is taking comfort in the fact that a number of schools and businesses across Milton Keynes and Bedfordshire are marking what would have been his 15th birthday on Friday 21 January.
Among the schools ‘Wearing it Blue’ to honour Shayen Patel (known to all as 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.
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.”
Shay passed away on 1 September 2020, aged 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.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically just 1% 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.”
Sue Farrington Smith said: “Our hearts go out to Shay’s family as they face his 15th birthday without him. Special occasions like birthdays, anniversaries and Christmas are particularly tough for families who have lost relatives as my family know only too well since my niece Alison Phelan passed away, just a few weeks short of her eighth birthday, from an aggressive brain tumour.
“Brain Tumour Research is indebted to Shay’s Smiles for its investment of £143,657 into GBM research at Queen Mary. This will fund a PhD researcher, currently being recruited, over a four-year period, working within an established team focused on developing new treatment strategies to inhibit the progression of GBM brain tumours.
“Less than 12% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers and Brain Tumour Research is determined to change outcomes for brain tumour patients and ultimately find a cure.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the 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 and is also campaigning for greater repurposing of drugs.
To make a birthday donation to Shay’s Smiles go to www.justgiving.com/nicola-o-dea-patel3
To find more information about Shay’s Smiles go to www.facebook.com/ShaysSmiles
