A Woburn Sands family of a teenager who passed away in September 2020, having been diagnosed with an aggressive, incurable brain tumour, share his story to mark what would have been his 14th birthday this Thursday 21 January.
Niki and Deenu Patel , 40 and 41 respectively, of Woburn Sands, Milton Keynes, are encouraging people to sign a petition calling for greater investment into the devastating disease, which killed their son Shay, 22 months after his diagnosis.
Niki, mum also to 12-year-old Dylan and Jasmine, eight, said: “One of the hardest parts of Shay’s journey, was that we knew from the outset that we would lose him. Whilst we had hope of a miracle, there is no cure for such a tumour and there have been no breakthroughs in treatment for over 30 years.
“The only way that this will change is by increasing funding for research.”
Shay’s diagnosis occurred after he came into his parents’ bedroom at 5.30am on the morning of 9 November 2018 and had a seizure in their bed.
Niki continues: “By the time he arrived at A&E, he seemed back to his usual self and laughing and joking. They carried out various tests but, because there had been no other symptoms or concerns, we were shocked to the core when one of the doctors came in to tell us that a scan showed that Shay had a tumour on his brain.”
Shay was transferred to the John Radcliffe Hospital in Oxford for surgery, but surgeons were only able to attempt a biopsy as the tumour was so diffuse, growing “like a spider’s web” over his right temporal lobe.
A second biopsy had to be performed because the first hadn’t produced the correct tissue, which revealed that Shay had a glioblastoma multiforme (GBM) brain tumour with an average survival prognosis of 12 to 15 months.
Niki went on to say: “Shay, a pupil at Bedford Modern Senior School, was the kindest, most loving, funny and loyal young man who loved to help others.
“There are just no words to describe how you deal with such a diagnosis, how you can comprehend that your child can be a normal 11-year-old child, doing well at school and football-mad just a few weeks back and now with a terminal illness. We researched every spare moment we could and learnt how this is an extremely aggressive tumour, and that the chemo and radiotherapy treatment planned for him would only be palliative and extend his life if we were lucky, but there would be no chance of curing him.
“Shay underwent experimental treatment in the United States and he even started an experimental personalised vaccine treatment in Germany last year before everything was halted due to COVID-19. By early May, a scan showed that the tumour was growing again and very aggressively.
“Despite our hopes and prayers, Shay continued to decline and lost the use of his left side. That is the cruellest part of a brain tumour, the way that it takes the person. It affects their ability to walk, remember, and, eventually for Shay, he stopped speaking, lost the ability to swallow and was fed via a feeding tube. On the morning of 1 September 2020, Shay, aged 13, took his final breaths peacefully with all of his family around him. His brother sitting beside him, begging him to keep on breathing, will be a memory that will haunt me forever.
“Brain tumours kill more children and adults under the age of 40 than any other cancer and the only way to change that is through research to find more effective treatments and ultimately a cure. That’s why I am appealing to everyone to sign the petition calling on the Government to increase the investment into brain tumour research to £35 million per year.
Determined to ensure her son didn’t die in vain, Niki is campaigning alongside the charity Brain Tumour Research to help add 100,000 signatures to its petition by the end of February 2021.
Just 12% of brain tumour patients survive more than five years compared with an average of 50% across all cancers, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Charlie Allsebrook, community development manager at Brain Tumour Research, said: “No parent should have to lose a child to this most awful disease; no family should have to suffer the heart-break of losing a loved one in this way.
“We are grateful to Niki and Deenu for supporting our petition and helping to raise awareness. If everyone could spare just a few minutes to sign and share, we will soon get the 100,000 signatures we need and help to find a cure for families whose loved ones have been affected by brain tumours.”
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 calling 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 sign the petition, go to www.braintumourresearch.org/campaigning/brain-tumour-research-petition
