A Staplehurst lady’s fundraising in memory of her “cheeky, mischievous” three-year-old nephew has helped support vital new childhood cancer research.
Philippa Terry’s nephew, Kai Nell, was just two years old when in 2015 he was diagnosed with an extremely rare and aggressive subtype of acute myeloid leukaemia (AML) called acute megakaryoblastic leukaemia.
Kai, who lived in Perth, Western Australia, underwent eight rounds of chemotherapy, total body irradiation and two stem cell transplants. Despite this, there were no more treatment options left by Christmas 2016. He died less than a month later, just a few weeks before what would have been his fourth birthday.
After Kai’s death, Philippa set up #teamkai, a Special Named Fund at CCLG: The Children & Young People’s Cancer Association, to raise money for research into childhood AML. Together with Kai's parents, Kara and Richard Nell, she wanted a way to remember Kai that made a difference to other families facing an AML diagnosis in the future.
Philippa said: “When we came back from Kai’s funeral, there were lots of ideas about how we'd like to do some fundraising and CCLG’s Special Named Funds programme stuck out because we were really motivated to fundraise for specifically childhood AML.
“We just all felt that you have to try and take some positives out of what is a terrible situation. And this makes it feel like his legacy lives on, in helping other children.”
Since being set up, the fund has raised over £80,000 and now, along with other CCLG Special Named Funds, it has been able to contribute to the funding of a pair of new research projects, taking the total projects supported by #teamkai to four.
The funding is part of a collaborative effort, worth £600,000, between CCLG: The Children & Young People’s Cancer Association and Blood Cancer UK, with the projects being led by Dr Samanta Mariani at the University of Edinburgh, and Dr Karen Keeshan at the University of Glasgow.
Philippa said of the research: “I hope that the money that we raise leads to a cure, that's the ultimate goal. But the stepping stones to that are finding how to get better and more targeted treatments for children.
“So, these types of research projects, I hope that they lead into more research or clinical trials that can find more suitable treatments for paediatric patients.”
Reflecting on the fundraising, Philippa said she never expected to have raised such a huge amount, but has no plans to stop now, adding: “It's amazing, but now I really have the drive to try and get it over £100,000.
“It's incredible, we've been so supported by our local community. Kai's dad lived here before he emigrated to Australia. He's still very well-loved here. We've had some amazing opportunities. We've gone to West Ham Football Stadium, we've done bucket collections, we've held charity balls.
“We wouldn't have been able to do it without the support of the local community – friends, family, local businesses that always sponsor us or offer raffle prizes. It really takes a big effort, but it's incredible to think that there's £80,000 pounds there and it's all down to setting up #teamkai and wanting to do something.
“To have helped fund four research projects now, that we know where the money has been spent on, is something I'm really proud of.”
Ashley Ball-Gamble, Chief Executive of CCLG, said: “We are delighted to bring the fantastic fundraising efforts of our Special Named Fund families into this collaboration with Blood Cancer UK. By working together, we can accelerate funding for the most promising childhood cancer research and move faster toward breakthroughs for these young patients.”
Dr Richard Francis, Deputy Director of Research at Blood Cancer UK, said:
“Thanks to decades of research, survival from the most common form of childhood leukaemia has been transformed – from just one in 10 children surviving in the 1960s to around nine in 10 today. But for babies and children with aggressive forms of the disease, those gains have not been shared equally.
“Every child deserves the best possible chance of survival, and that’s why funding innovative research like this in Scotland is so vital. It’s only possible because of the determination of families and supporters who refuse to accept that current treatments are good enough.”
To support #teamkai, visit https://specialnamedfunds.cclg.org.uk/teamkai
Find out more about CCLG: The Children & Young People's Cancer Association here.
If you would like further information, please contact our team at media@cclg.org.uk.
