Milton Keynes parents call for more research into devastating disease that killed their young son
The tragic death of a 13-year-old boy has sparked a call for more investment into brain tumour research.
Shay Patel died last September, just 22 months after he was diagnosed with an aggressive and incurable brain tumour that was growing "like a spider's web" over his right temporal lobe.
A bioposy revealed the tumour was a glioblastoma multiforme (GBM), which has an average survival prognosis of 12 to 15 months.
Shay's parents Niki and Deenu Patel and now sharing his story to mark what would have been his 14th birthday this Thursday. They are encouraging people to sign a petition calling for greater investment into the devastating disease
Niki, mum also to 12-year-old Dylan and Jasmine aged 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 said: “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.
Niki said: “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," said Niki. "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 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."
A pupil at Bedford Modern Senior School, Shay is described as "the kindest, most loving, funny and loyal young man who loved to help others".
His family is now campaigning alongside the MK-based charity Brain Tumour Research, which has launched a petition calling on the government to increase the investment into brain tumour research to £35 million per year.
They are aiming to gather 100,000 signatures to its petition by the end of February.
Niki said: "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."
Just 12 per cent of brain tumour patients survive more than five years compared with an average of 50 per cent across all cancers. Yet historically just 1 per cent 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.
Since national cancer spend records began in 2002, £680 million has been invested in breast cancer, yet only £96 million in brain tumours – that’s a difference of £35 million a year over 17 years.
Over 40,000 people have already signed the petition, which can be viewed here .