The mother of a Milton Keynes boy who lost his life to a brain tumour four years ago (September 1, 2020) is working with Brain Tumour Research this month to raise awareness of the disease.
The fourth anniversary of the passing of Shay Patel, the inspiration for Milton Keynes charity Shay’s Smiles, fell on September 1, at the beginning of Childhood Cancer Awareness Month.
Shay died in 2020, less than two years after being diagnosed with a glioblastoma (GBM), which has an average survival prognosis of between 12 and 18 months. It led his Woburn Sands family to set up Shay’s Smiles to support families of children diagnosed with GBM.
The charity is also funding a PhD student over a four-year period, at a cost of £143,657, working within the team at the Brain Tumour Research Centre of Excellence at Queen Mary University of London, developing new treatment strategies to inhibit the progression of paediatric diffuse high-grade gliomas, which includes brain tumours categorised until recently as paediatric GBMs.
On average 420 children in the UK are diagnosed with a brain tumour every year, and one in three children who die of cancer are killed by a brain tumour.
This month, during Childhood Cancer Awareness Month, Shay’s mum, Niki O’Dea Patel, is working with Brain Tumour Research, of which Shay’s Smiles is a Member Charity, to raise awareness of this devasting disease which kills more children than leukaemia.
Niki said, “When Shay became ill, we soon learnt the stark reality of his diagnosis with a deadly GBM. But we weren’t prepared to give up on our beloved eldest child, doing our utmost to find alternative options for his clinical care, which involved going to the United States as well as Germany. As a parent told your child has cancer, you assume in this day and age there will be something to increase the odds and give you hope, but the harsh reality is that with brain cancer there are no such treatments.”
Niki added, “The whole build-up to Shay’s anniversary on 1st September is very tough. It’s the start of a new academic year – one when his friends will be all turning 18 and looking ahead to A Levels next summer and probably going on to university. Shay would have been 18 on 21st January – so we are already thinking about how we will mark that significant date.
“We can almost see Shay’s grave from our house and we visit him every day." On Sunday, September 1, Shay's family had all his friends over with their families for a barbecue to remember the "fantastic boy Shay was." Niki continued, "As a family, we are, of course, devastated by his loss, but this same sadness is shared by our wider family and Shay’s friends.
“With Shay’s anniversary falling right at the beginning of Childhood Cancer Awareness Month, it gives us a real focus to share Shay’s story and added motivation to continue Shay’s legacy through the charity, helping other families and funding vital research”, Niki concluded.
Brain tumours cause the death of one in three children who die from cancer, with around 420 children in the UK diagnosed annually. They represent more than a quarter (26%) of all childhood cancers in Great Britain and are more deadly to children than leukaemia. Symptoms vary but may include headaches, nausea, seizures, vision problems, balance issues, and behavioural changes. Treatment options depend on the tumour's type, size, and location, and may involve surgery, chemotherapy, or radiotherapy. Unfortunately, 62% of children who survive brain tumours endure lifelong disabilities.
Medulloblastoma, the most common high-grade paediatric brain tumour, is more prevalent in boys than girls. Paediatric glioblastoma (GBM) now falls under the classification of "paediatric-type diffuse high-grade gliomas," which have poor clinical outcomes. Diffuse midline glioma (DMG), including DIPG, is the deadliest form of childhood cancer, with an average survival of just 8 to 12 months, accounting for 10-15% of childhood brain tumours. Ependymoma is the third most common paediatric CNS tumour, with significant molecular and clinical diversity.
Dan Knowles, CEO of Brain Tumour Research, said, “Our Member Charities, including Shay’s Smiles, are helping us build a game-changing network of world-class Research Centres of Excellence in the UK. Our collective voice carries greater weight in media coverage and adds weight to our political campaigning.
“We are very grateful to Shay’s Smiles for generously supporting vital research at our Centres of Excellence.
“Our thoughts are with Shay’s loved ones as they face the fourth anniversary of his loss. We will also be remembering throughout September all those whose support has come about because of the diagnosis of or loss of a child or young person with a brain tumour.”
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 find out more about how Brain Tumour Research is funding the fight against childhood brain tumours or to donate, please visit https://braintumourresearch.org/
To donate to Shay’s Smiles go to www.shayssmiles.org/shop or for information about Shay’s Smiles fundraising ball at Wilton Hall in Bletchley in October, go to www.shayssmiles.org/contact or email support@shayssmiles.org.
