The parents of a three-year-old boy, Raffy Holliday, were left heartbroken after he passed away at Great Ormond Street Hospital (GOSH) due to inflammation of the brain caused by human herpesvirus 6B (HHV-6B).
Raffy, who was undergoing leukemia treatment and had undergone a bone marrow transplant, had been living with the active virus for two years before it tragically claimed his life. The Sun reported that he had been regularly tested for three other strains of the human herpes virus, including Epstein Barr, cytomegalovirus, and adenovirus.
Raffy’s mother, Imogen, is urging the NHS to take more precautions to protect transplant patients. She expressed her frustration that Raffy was not routinely tested for the HHV-6B strain unless he reached a critically weakened immune state. Due to his transplant, Raffy had a compromised immune system, lacking the necessary white blood cells to fight off infections. Imogen and her husband James are calling for HHV-6B to be included in the standard weekly viral tests conducted on post-transplant patients.
Imogen emphasized that there was no indication Raffy contracted the virus in the hospital, as it is widespread among children. She believes that testing for HHV-6B should be a priority due to its prevalence and the potential dangers it poses. The grieving parents hope to raise awareness about the virus through their campaign named “Red Duck,” in honor of Raffy’s favorite color and animal. They have started a petition and plan to present it to the NHS once it reaches 10,000 signatures.
During Raffy’s treatment, there were alleged gaps in testing and monitoring for HHV-6B, which resulted in numerous health complications, including ulcerative colitis, gut bleeds, mouth sores, pancreatitis, blood clots, and seizures. Imogen believes that addressing these issues will prevent other families from enduring similar tragedies. The family’s focus on the campaign has helped them cope with their grief, providing them with a sense of purpose and a way to honor their son’s memory.
GOSH has acknowledged the family’s concerns and is actively communicating with them. They follow the guidelines set by the European Conference on Infections in Leukemia (ECIL) and express their condolences to Raffy’s family. GOSH remains committed to learning from each patient’s experience and continuously improving their care.
The Holliday family’s petition and campaign aim to shed light on HHV-6B, educating both medical professionals and the public about the severity of the virus. While Raffy’s absence will always be deeply felt, the family is gradually adjusting to a new normal and finding solace in their efforts to raise awareness and prevent similar tragedies from occurring in the future.
