This is the second petition and campaign for RedDuck- 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.

We want to amend current protocol for pre transplant testing, to include ciHHV6 (chromosomally intergration). This will be to ascertain the host status and ensure HHV6 can be monitored with clarity, regarding reactivation and disease progression.

ciHHV6 can be inherited- from one or both parents- or acquired- from a donor, after transplant. Chromosomally intergrated HHV6 can be tested for post transplant, however this gives an ambiguous result- as a transplant, be it stem cell or solid organ, can in fact give medical the status of the donor, as opposed to the host. 
To get an accurate and reliable ciHHV6 status of the host, post transplant, hair follicles or nail clippings need to be collected and sent to a laboratory in USA, along with a medical referral form and $400. I have been unable to find a laboratory in UK that can run this test. This is what makes understanding the nature of ciHHV6 so difficult; the lack of opportunity to gain answers in retrospect.

By incorporating a blood test for ciHHV6 pre transplant, better understanding for the significance of HHV6 can be ascertained. ciHHV6 lives within every uncleared cell, therefore blood and CSF will show a positive result, however, this does NOT always require anti viral treatment- however, can be monitored for reactivation. Avoiding anti viral treatment if not necessary can spare toxicity to bone marrow and kidneys. 

ciHHV6 is currently part of a large national study, to gain more knowledge of its potential disease implications. 

I have been trying to ascertain Raffy’s ciHHV6 status for better understanding of what happened to my son, led to his demise and ultimately, his death. I have a negative reading post transplant for Raffy’s ciHHV6 status, however this is the status of his DONOR. To find Raffy’s status, I have to send hair follicles to USA- but getting a referral once the patient is deceased proves difficult. I gave Raffy’s hair follicles to his hospital and virologist to test, however, this was not done. Raffy had consistently high viral loads in his bloods and he did not achieve a negative status for HHV6 AT ALL in the 2 years he carried this virus- after reaching out to academics, it has been suggested that Raffy could well have had a positive ciHHV6 status. 

Updating this protocol, by running one more blood test, pre transplant- clarity and understanding of status and treatment procedures can be identified, with medical professionals having better understanding of the complete picture.