HHV6 awareness & campaign- for my late son, Raffy

Hi,

My name is Imogen, I am the mother of Raffy, a real life super hero. Raffy passed 29/03/23 aged 3 3/4, due to HHV6 encephalitis.

Let me back track.

Raffy was diagnosed with MPAL (mixed phenotype acute leukaemia b- myeloid)- this was comprised of ALL/AML & a hybrid. Following this diagnosis 23/05/20, Raffy underwent chemotherapy, blinatumomab & consolidation chemotherapy.

Blinatumomab had only previously been used for ALL, so Raffy was a first. Due to Raffy’s excellent response, he was entered into ‘The World Genomic Testing Program’, these results were taken to the Health Secretary and children diagnosed with MPAL, internationally will now receive Raffy’s protocol. So by the age of 3, Raffy had already changed the World!

By September 15th 2020, Raffy was in full remission.

21st September Raffy was admitted for a bone marrow transplant with a 10/10 unrelated donor. Recovery was slow, after 12 weeks he was discharged. Following this he had countless issues with delayed platelet engraftment, cytopenias, gastro issues, rashes and unexplained fevers. He was kept on immunosuppression for 2 years and had reactivated HHV6 detected in both blood and bone marrow. I cannot recall the amount of times he was admitted to hospital with fevers and persistent negative blood cultures.

Raffys final admission was 21st September 2022. After the hardest 6 months of our lives, Raffy passed away. In this time he had ulcerative colitis, gut bleeds, external ulcers, mouth sores, pancreatitis twice, a blood clot, an infarcted spleen, a bleed between his brain and skull, seizures and finally encephalitis, all as a result of HHV6. Raffy’s T cells did not recover. He had zero immune system. Our darling boy battled so very hard. He was given anti viral treatment, but this was 8 months after the detection of HHV6 in blood and bone marrow with PCR testing. This was too late.

RedDuck has been established in memory of my son, Raffy. I 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. RedDuck wants to focus on two campaigns:

1. Adding HHV6 PCR to the standard weekly viral tests that are run post transplant (Raffy had a period in the 2 1/2 years post bmt of 7 months with no HHV6 monitoring)

2. Testing for ciHHV6 (chromosomally intergrated HHV6) prior to transplant, to ensure intergrated status of host is established before the transplant takes place.

This fundraiser is to create hand copies of literature, create merchandise for the brand and fund pop up campaigning events nationally. We aim to raise the status of HHV6 and ensure it is no longer the forgotten virus.

Thank for your support, from both myself and Raffy

Red- Raffy’s favourite colour

Duck- Raffy’s favourite animal