Harvey Hext’s legacy funds groundbreaking trial for children with neuroblastoma

Around £100,000 raised to help Harvey Hext – a little boy who captured the hearts of the Chew Valley and the wider world before passing away from cancer – is being used to part fund a pioneering new drug trial that will benefit children diagnosed with neuroblastoma in the UK.

Harvey was 3 years old when he was diagnosed with neuroblastoma in 2010; he had a large tumour in his stomach. He was the only child in the world known to have both Down’s syndrome and neuroblastoma. He underwent chemotherapy, a 14-hour operation, MIBG therapy and an 18-month course of Cis Retinoic Acid. The treatment seemed to be working until he relapsed in October 2014, with a new tumour in his chest.

To try to help Harvey beat the disease, his family launched a fundraising campaign with the support of Solving Kids’ Cancer – the UK’s dedicated neuroblastoma charity – so that Harvey could access a pioneering clinical trial in America, which would cost hundreds of thousands of pounds.

Numerous fundraising events were held for Harvey over the years from fire walks to promise auctions but at the centre was the annual Harvey Hext Scarecrow Trail, which every year saw residents and businesses around the Chew Valley create and display scarecrows. The trail has become a local institution, greatly enjoyed by families from far and wide who not only wanted to find all the scarecrows but also help Harvey access the clinical trial. Sadly, before Harvey could realise this chance, he passed away in November 2015.

Harvey with his twin Spencer during the Scarecrow Trial, a fundraising event which contributed to his legacy now being used to help other children with neuroblastoma

Now his parents, Sarah and David from Winford, have spoken of their pride that funds raised in their son’s name are being put to good use helping to fund a new clinical trial that could benefit other children, like Harvey:

“Harvey touched many people’s hearts and we can never express how grateful we are for all the support we received when fundraising for his treatment abroad. Sadly for us this treatment was never to be, but being able to use the funds raised for this new treatment, giving hope to other families, is a hugely positive step.”

“Families having to raise funds and travel across the world for treatment that could help their children beat neuroblastoma is an unacceptable situation to be in,” said Harvey’s parents Sarah and David Hext. “Thanks to Solving Kids’ Cancer’s work and the generosity of the public in supporting Harvey’s Appeal, we’ve been able to bring this treatment to the UK so families won’t have to face this overwhelming situation.

“Neuroblastoma is difficult to treat and trials are few and far between but without vital funds for clinical trials, children will continue to be taken by this cruel disease and families will continue to be devastated.”

This groundbreaking trial, funded by Harvey’s legacy, is the first to combine two antibodies and targeted radiation in one treatment, which would be much less toxic than most current alternatives, and which would have a lower treatment burden on children, and their families.

Available to children in the UK on the NHS, the trial will be delivered through University Hospital Southampton and University College London Hospital. It will also be available to children in Europe and America. If successful, this trial could have a drastic impact on the future of standard therapy.

Solving Kids’ Cancer, central in orchestrating this trial in collaboration with other charities and researchers, commented: “While it’s vital that we can help families like Harvey’s to raise funds for pioneering clinical trials abroad that could help their children beat cancer, ultimately, we want the best treatment options to be available for children here, so that families don’t have to face undue strain.”

“This is why we are so excited to see this innovative trial come to fruition which will benefit children in the UK through the NHS. This trial provides children with a less burdensome treatment option than most current alternatives whilst working towards our mission to improve survival rates for all children diagnosed with neuroblastoma.”

This article was first published by Chew Valley Gazette.