We started this journey in September 2013, after our own Brave Knight was 36th in Europe to be diagnosed with XIAP Deficiency. Unfortunately he lost his battle in May 2014. So as you can see this is a very rare condition, it's a genetic condition that only effects boys. It stops the immune system from working properly, so a common cold can become a matter of life or death. As well as the condition, the treatment for it is also life threatening. We want to raise money to fund any research to stop the treatment also being life threatening.