Dying wish of teenager fulfilled on first anniversary of his loss to brain tumourStuart | YLF
The family of a 13-year-old from Woburn Sands, Milton Keynes, is fulfilling his wish to set up a charity in his name as they mark the first anniversary of his passing from an aggressive and incurable brain tumour.
Shayen Patel (known to all as Shay) died on 1 September 2020, less than two years after being diagnosed with a glioblastoma multiforme (GBM) brain tumour. He wanted to help other families with children diagnosed with life-threatening illnesses and, while he was still alive, he and his family began planning to set up Shay’s Smiles. The charity will help children and their families access specialist doctors and healthcare facilities and fund vital research to help find a cure for brain tumours.
Shay’s brother Dylan, 12, and nine-year-old sister Jasmine are very involved with the charity and fundraising events and find comfort in being able to help keep Shay’s memory alive.
His grieving mum, Niki O’Dea Patel, said: “Through our tears on this saddest of days, we are glad to be doing something positive in launching Shay’s Smiles and bringing a ray of light out of a terrible tragedy.
“As a parent told your child has cancer, or a brain tumour, you assume in this day and age there will be something to increase the odds and give you hope. The harsh reality with Shay’s type of tumour is that there are no such treatments.”
Coinciding with the first day of September – Childhood Cancer Awareness Month, Shay’s Smiles, which is also becoming a Member Charity of national charity Brain Tumour Research, has announced that it will fund a PhD student over a four-year period at a cost of £143,657. The researcher will be working within a team of experts at Brain Tumour Research’s Centre of Excellence at Queen Mary University of London (QMUL), developing new treatment strategies to inhibit the progression of GBM brain tumours.
Less common in children, GBM is the most common and aggressive form of brain tumour in adults. The average survival time is devastatingly short – just 12 to 18 months and, despite advances in surgery and adjuvant treatment, the survival prognosis has barely improved during the last three decades.
Led by Professor Silvia Marino, the team at QMUL is focused on using GBM stem cells to help develop unique, patient-specific treatments.
Prof Marino said: “Using donated brain tumour tissue, we grow individual tumour cells in a petri dish and compare them to normal, healthy brain cells from the same patient. Using a combination of laboratory work and machine working (sophisticated analytical computer programs) the team is already identifying key molecular differences that can potentially be exploited to find a cure.
“The next step is to continue to identify the differences in tumour cells that can be targeted with drugs and begin to test those likely to have the greatest success.”
Niki, 40, a local businesswoman, said: “Losing Shay was totally heart-breaking. Apart from the standard treatment for GBM, my husband Deenu and I conducted exhaustive research to find other options for Shay. Knowing the treatment he was receiving would at best be palliative, we were desperate to find ay other treatments that may have extended Shay’s life, although these are often met with scepticism by medical professionals due to the lack of data on their effectiveness. only for our hopes to be dashed when Shay’s oncologist discouraged us, advising there was ‘no evidence’ any of these treatments worked.
“We were able to take Shay to a private German clinic to start an immunotherapy vaccine that had been tailored to hi, but sadly he had a recurrence of his tumour before these had a chance to take effect and Shay then deteriorated quickly.
“Setting up Shay’s Smiles, which is becoming a Member Charity of Brain Tumour Research, is our way of doing something positive for other families. Our dearest wish is that Shay’s legacy brings hope for families in the future who learn that a loved one has been diagnosed with a brain tumour.”
Sue Farrington Smith MBE, chief executive for Brain Tumour Research, said: “Losing a child to a brain tumour is devastating; you never get over it. When my sister’s little girl Alison Phelan passed away in June 2001, just three weeks before her eighth birthday, we were shocked at the lack of awareness and horrified to discover how little research was going into brain tumours.
“Brain Tumour Research is indebted to Shay’s family and Shay’s Smiles for their incredible donation and support to fund the fight against brain tumours. Together we will help find a cure so that no other families have to go through the devastation that our families have.”
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.
On 19 September, 91 supporters of Shay’s Smiles including Shay’s friends and family and his 12-year-old brother Dylan, will be climbing Snowdon to help fund research to find a cure. You can sponsor them viawww.justgiving.com/fundraising/nicola-o-dea-patel