How Bedfordshire family fulfilled final wish of teenage son who died from brain tumour
They set up charity on first anniversary of his death
The family of a 13-year-old have fulfilled his dying wish as they mark the first anniversary of his death from an aggressive and incurable brain tumour.
Shayen Patel - known to all as Shay - died on September 1, 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 a charity - called Shay’s Smiles.
It 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 - who lives in Woburn Sands on the Beds/Bucks border - 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 has announced 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.
Led by Professor Silvia Marino, the team at QMUL is focused on using GBM stem cells to help develop unique, patient-specific treatments.
Mum Niki, 40, added: “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: “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.”
On September 19, supporters of Shay’s Smiles including his friends and family, will be climbing Snowdon to help fund research.