This is the moving story behind the family charity, Leukaemia Busters.
If there’s something strange in the neighbourhood…who you gonna call?
Well one little Ghostbusters fan and leukaemia sufferer believed in the power of his parents when it came to supporting their tireless attempts to improve the diagnoses and treatment of leukaemia.
And so begins our retelling of the inspirational story behind the inception and development of research charity, Leukaemia Busters.
This is a story about a couple from Southampton who turned their own personal tragedy into an opportunity to save lives.
Scientists and husband and wife; David and Bee Flavell had dedicated their careers to developing drugs to treat Leukaemia; little did they know that their only child, Simon, would be threatened by the disease himself at just eight years of age.
“Simon’s illness came like a bolt out of the blue. It was totally unexpected and very difficult to deal with, initially. But nevertheless like others who find themselves in that position, we got on and did what needed to be done.” David Flavell
Simon was diagnosed with T cell acute lymphoblastic leukaemia (T-ALL) in the Summer of 1988. His parents knew that this strain of the disease was particularly aggressive and difficult to cure, and that should he successfully beat the disease he still had a 50:50 chance of relapsing.
This realisation galvanised his parents into action to try and do something with their own work that might be of benefit to him.
Instantly, their objective changed from diagnosing leukaemia to finding a cure for the disease to try and save Simon. And so the parents threw themselves into a new wave of research to develop antibodies and improve treatment.
As news spread about what the Flavell’s were doing, another two sets of parents – Wendy & Robert Sutcliffe, and Julie & Paul Daws – who’s children were also undergoing treatment for leukaemia at Southampton General Hospital at the time, suggested that they combine their energy and efforts, and set up a charity.
“Simon was sitting at the dinner table one day and he spontaneously came out with the name ‘Leukaemia Busters’. At the time he was a great Ghostbusters fan and so the choice of name for the charity was a natural one. He even helped us design the logo.” David Flavell
However as Leukaemia Busters grew stronger, Simon grew weaker. He began to relapse and time was running out to find him a cure.
“I always remember when he realised he’d relapsed, he locked himself in the bathroom for over an hour. This is a 9 year old boy remember. It was very difficult to coax him out of the bathroom – it was a very difficult time. And even now, it’s very difficult to talk about.” David Flavell
Tragically, Simon Flavell lost his fight against leukaemia in 1990 at the age of 10. His bravery was admirable and his parents used his strength to continue their battle to find a cure for the disease.
“Sadly we didn’t make it; we didn’t produce anything in time for him. But he was adamant – when he knew he was going to die – he was adamant that we should carry on and that hopefully one day we would be able to save other people like him.” David Flavell
David and Bee kept their promise to Simon and over time, they successfully developed the country’s first antibody-based therapy to treat children with relapsed leukaemia.
And although they couldn’t save their son, the couple were – and still are – determined to help others and make sure that Simon’s memory lives on through the magnificent breakthroughs they’ve achieved.
“It was a iterative process that made us feel very proud of where we had come from – it was a truly remarkable experience. We have no hard feelings or regrets for what we’ve done and we certainly didn’t feel that Simon had been cheated in any way. You just have to look forward – to the future. And I think we’re in a really privileged position whereby we can do things to help patients in the future. We’re very proud to be part of that process, and that’s all been enabled through our son Simon.” David Flavell
Antibody-based drugs are now commonly used to tackle a variety of cancers including lymphoma and leukaemia – but Leukaemia Busters recognizes that there is still a lot more that needs to be done to ensure that such antibody treatments are made maximally effective for all types of leukaemia, lymphoma and other related blood cancers.
Dr David Flavell explains more about the life saving research work currently being conducted by Leukaemia Busters scientists and doctors:
“Our vision is a world in which leukaemia is safely, quickly and completely cured in every patient.”
Savoo is proud to be working with ordinary people who’re doing extraordinary things. And now, we need your help to make sure that people like David and Bee can continue to develop lifesaving treatments.
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