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Almost £10,000 has been raised in honour of a three-year-old boy described as a “real life superhero”.
The impressive sum was raised at an art auction, where 70 pieces ranging from clothing to artwork and pottery were donated by 65 artists, known both locally and globally.
Held at the Astor Theatre in Deal, it was in support of the RedDuck campaign – soon to be a charity – which was started in memory of three-year-old Raffy Holliday from Deal, who passed away earlier this year.
Launched by Raffy’s mum and dad, Imogen and James, the campaign is to fight to raise awareness and change the way a virus is tested and treated by medical professionals.
Taking time to thank everyone who joined in at the auction, Imogen confessed to being “totally blown away by the support”.
“Thank you to the amazing artists, the wonderful bidders, the musicians, the caterers, the fantastic Peter and Emma for hosting superbly and, of course, the wonderful Lizzy for her incredible intro,” Imogen, 35, said.
“The event was a success and we managed to raise, from auctioned items and donations, £9,773 for RedDuck and we are now focusing on our next events – a 23 mile coastal walk in September and an art talk by Kath Abiker.
“RedDuck will continue to campaign for protocol changes with regards to HHV6 management, monitoring and testing as well as raising awareness of the virus and continuing to raise money for children in palliative care to receive funding for holistic treatment and sensory care equipment.”
Raffy tragically lost his battle with his health in March as a result of Human herpesvirus 6B (HHV-6B) related encephalitis - inflammation of the brain.
HHV-6B is one of two commonly linked viruses under the HHV6 name, with 6B presenting in as many as 70% of children by the age of three.
Most will develop a natural immunity to it but it can prove to be fatal to children with a compromised immune system such as Raffy.
Taking its name after Raffy’s favourite colour and animal, RedDuck aims to raise awareness for HHV6 and make changes to the way it is treated by medical professionals.
RedDuck hopes to elevate the status of HHV6 in immunocompromised patients and change outdated protocols regarding testing and monitoring of this virus and support children and their families who have no choice but to live their lives within the confines of a hospital.
In particular, Imogen and James want to add HHV6 to the weekly panel of viruses which are tested in hospitals.
Diagnosed with MPAL - mixed phenotype acute leukaemia - at 11 months old, Raffy had multiple rounds of chemotherapy and experimental immunotherapy to fight three different types of cancer.
The success of the immunotherapy in treating the cancer saw Raffy become the first Great Ormond Street Hospital (GOSH) patient to be put into ‘The World Genomic Testing Programme’.
Although the immunotherapy treatment was a success, a bone marrow transplant in September 2020 led to issues such as being immunocompromised and the contraction of HHV6.
As a result of HHV-6B in his bone marrow and blood, Raffy would suffer from fevers, gastro issues, and other illnesses, and was kept on immunosuppression for two years.
Imogen described Raffy as “the most perfect, beautiful little boy”.
The 35-year-old said: “He absolutely is a real life superhero, and he was the happiest person I’ve ever met
“He was a ray of sunshine.
“If we could prevent one family from going through this then we’ll have done well.
RedDuck is currently raising awareness through its Instagram page @redduck_hhv6 and is in the process of finalising its website www.redduckcampaign.com