RedDuck is an initiative set up following the passing of my son, Raffy aged 3 3/4 due to HHV6 encephalitis. He had received a bone marrow transplant from an unrelated 10/10 donor. He had constant HHV6 red flags; fever, rash, delayed platelet engraftment, T cell deficiency and cytopenias, gastro issues and more.

 HHV6 was isolated in his blood and bone marrow 4 /5 months post transplant. This was NOT consistently monitored, as EBV, CMV and adeno virus are as he did not meet the criteria, neutropenia, for testing at all times. He did, however have a persistent HHV6 virus that was present even though, at times, he had a neutrophil count within range of normal. 

My son endured a terribly painful ordeal with ulcerative colitis, two bouts of pancreatitis, blood clot, infarcted spleen, a bleed between his brain and skull, seizures and encephalitis. 

He had lengthily periods, at one point in his treatment 7 months, of no monitoring despite testing positive consistently, without achieving a negative status at all.

We feel that adding HHV6 to the weekly monitoring in a transplant setting, appropriate treatment, whether it be removal of immunosuppression or use of anti virals- could lead to a more positive outcome for the patient. My son remained on immunosuppression for two years and as a result did not reconstitute T cells and as a result of this, passed away.