‘FRED would be incredibly proud’ – that is how the mum of a 14-year-old Dunchurch boy who died from leukaemia reacted after £112,000 raised in his memory paved the way for potentially life-saving research into the disease.
Fund-raising in the name of Fred Bennett has enabled research investigating the long-term effects of treatment of the disease in childhood on the brain.
Fred was 13 years old when he was diagnosed with acute lymphoblastic leukaemia (ALL) in July 2019.
His mum, Louise Bennett, said: “Fred was a relentlessly active boy. He was a perpetual risk-taker and always on the go. He loved going too high or too fast.
“Then, he was diagnosed with cancer very suddenly in July 2019. He had been unwell for a few days and the GP sent him for blood tests, suspecting glandular fever.
“He started treatment quickly, but his cancer did not respond to standard chemotherapy. After a complicated treatment plan, he received the new CAR T-Cell therapy, but he died in May 2020 – just 10 months after he was diagnosed.”
Determined to make a difference for other children diagnosed with cancer in the future, Louise set up Fred Bennett’s Don’t Look Down Fund, a Special Named Fund at Children’s Cancer and Leukaemia Group (CCLG), to raise money for research into childhood leukaemia.
Fred with mum Louise.
She said: “Fred’s medical team couldn’t explain why chemotherapy didn’t work for him. They tried every available option and worked tirelessly for him, but his cancer was relentless.
“We set up Don’t Look Down because we didn’t want other families to go through what we went through, and for kinder, more successful treatments to be found.
“We always said that Fred would change the world and, through Don’t Look Down, we hope he will.”
Since setting up the fund, Fred’s family, friends and a huge number of supporters have worked tirelessly to raise over £112,000, which has been able to contribute to the funding of several research projects.
Louise said: “Our community has been wonderful with fundraising, raising awareness and giving emotional support.
“Fred’s school friends have got cold and muddy in his honour, which is just as he would have liked it.
“They are all 18 now and making their way in the world, and we are incredibly grateful to all of them for continuing to keep Fred’s memory alive.”
The Don’t Look Down Fund, alongside three other CCLG Special Named Funds, has been able to help fund more vital new research, led by Professor Christina Halsey at the University of Glasgow. Louise said: “This new research project is exactly why we set up the fund. Cancer treatments take such a devastating toll on children’s bodies, even those who survive. Fred wanted to live his normal, active life, even when he was on treatment.
“This research project could potentially make those treatments kinder, with fewer lasting effects, which is exactly what we hoped to achieve.
“I think Fred would be incredibly proud to know that he has made a difference in this way.”
Professor Halsey said her project aims to understand why ALL treatment can cause long-term damage to the brain for some patients, reduce the side effects of chemotherapy on brain function, and improve quality of life for children with the disease.
She added: “It’s really important because up to one-third of children can have problems with learning and memory after leukaemia treatment and we don’t know how best to prevent or treat this.
“It is families that champion this type of research, and we couldn’t do it without them. To them I want to say thank you so much – you are such an important part of this team effort.”
Visit https://tinyurl.com/mbsc7m4a for more information about Fred Bennett’s Don’t Look Down Fund.
