Parents call for herpes testing after son, 3, dies from virus

Approximately 70% of children will be infected with HHV-6B by the age of three

Three-year-old Raffy had a weakened immune system as he was being treated for leukaemia (KentLive/BPM Media)

Two parents have launched a campaign to increase herpes testing and awareness after their three-year-old son died from the virus.

Raffy Holliday, from Deal in Kent, passed away at Great Ormond Street Hospital (GOSH) in March after suffering from swelling on the brain directly caused by human herpesvirus 6B (HHV-6B).

Three-year-old Raffy had a weakened immune system as he was being treated for leukaemia, having received a bone marrow transplant, chemotherapy, blinatumomab and consolidation chemotherapy. The virus was active in his body for two years before he died.

Three-year-old Raffy had a weakened immune system as he was being treated for leukaemia (KentLive/BPM Media)

According to the HHV-6 Foundation, approximately 70% of children will be infected with HHV-6B by the age of three.

Symptoms can include a fever, diarrhoea, or sometimes a rash, and in serious – though rare – cases, the infection can also result in seizures or encephalitis, a condition in which the brain becomes inflamed or swollen.

Raffy had been in remission by September 2020, but after his bone marrow transplant, he suffered “countless issues” with delayed platelet engraftment, cytopenias, gastro issues, rashes and unexplained fevers and was kept on immunosuppressants for two years.

Last admitted in September 2022, the three-year-old spent six months in hospital before he passed in what his parents have described as the “hardest months of our lives.” Given anti-viral treatment eight months after HHV6 was detected in his blood and bone marrow, his T cells “did not recover.”

“Raffy didn’t have an immune system. He didn’t have anything to fight the virus off”, Raffy’s mother, Imogen Holliday, told The Mirror.

"The hospital told us they don’t normally see HHV-6B do what it did to Raffy, but it can and it did. We don’t have our son anymore because of it.

"You can’t prepare for losing a child. You don’t imagine it will happen to you. It shouldn’t be our reality but sadly it is.”

Ms Holliday has since launched a campaign to increase awareness and campaign in her son’s memory, which has now surpassed £4500 of its £5000 target.

Named the RedDuck campaign – after Raffy’s favourite colour and favourite animal – Raffy’s parents, Ms Holliday and his father, James Holliday, hope to “tell his story, inform and educate HHV6 red flags and differentiate between symptoms of HHV6 and GVHD, graft vs host disease, the diagnosis Raffy was given- even though biopsy results do not support this.”

The campaign is aiming to create informational guides and merchandise for the brand and has already hosted its first pop-up event in Canterbury, Kent, exactly one month after Raffy passed away. As it takes to the streets, it is aiming to collect 10,000 signatures on a petition which it will present to the NHS when it reaches this number.

The money already raised by the campaign meant that Ms Holliday, alongside her husband James, were able to purchase and decorate a red gazebo, print adverts, and begin designing the website.

It is also planning to host an art auction at the Astor Theatre in Deal on 8 July.