Charity registration number: 1204815
- imogen@redduckcampaign.com
SUPORT
Raffy's Story
Raphael Atlas Holliday, aka Raffy, was born 12th June 2019- all 9lb 11oz of him and total perfection.
Raffy’s plight began 22nd May 2020, when he was admitted, during Covid, to our local hospital with a temperature and some small bruising on his arm and sole of his foot. Tests were carried out and devastatingly the following day, was blue lighted to GOSH. We had been told he had leukaemia. After further tests and 4 days later, we were told he had a rare type of leukaemia; MPAL- mixed phenotype acute leukaemia b-myeloid, to be precise.
Raffy underwent chemotherapy, immunotherapy and consolidation chemotherapy. On September 15th we found out Raffy was in full remission. The immunotherapy he had received was ordinarily used for ALL leukaemia and with Raffy’s excellent response to it- clearing two of the three components of his leukaemia completely, with the third at 0.001% , he became the pioneer for MPAL treatment protocol internationally.
Raffy was readmitted for his bone marrow transplant 21st September 2020. He received donor cells from a 10/10 unrelated match. This is the story of his journey and 2 year battle with HHV6, which led to a traumatic decline and his eventual death from encephalitis.
RedDuck has been established in his memory, named lovingly after his favourite animal and colour.
CHARITABLE PURPOSE
For the public benefit, the advancement of health in particular for those afflicted by Human Herpes Virus 6 (HHV6) by providing educational materials, support for those affected by the condition, and campaigning, and;
The relief those on need by reason of ill-health by providing grant funding for referrals for holistic complementary therapies and palliative care.
AIMS & OBJECTIVES
The concept of RedDuck was born the day before Raffy’s passing. We aim to elevate the status of HHV6 in immunocompromised patients and change outdated protocols regarding testing and monitoring of this virus. It is the most commonly reactivated virus in a transplant setting and for T cell depleted individuals, it can be life threatening. We endeavour to implement this through our campaigning, both in person and online.
RedDuck also champions inclusivity and supports children and their families who have no choice but to live their lives within the confines of a hospital. We hope to bring alternative treatments to children in palliative care, raising funds for holistic treatments and sensory equipment that may bring comfort during the final stages of life.
We hope to inform families, educate the next generation and raise awareness with RedDuck.
