Our son Ben was diagnosed with DIPG, a very rare and aggressive brain tumour, aged 7. Previously fit and well, on diagnosis, we were told his tumour was inoperable and incurable and that we had at best a year left with our son. Despite taking part in a clinical trial and having intensive treatment, Ben passed away 6 months later. Following his death, we found little in the way of regular, ongoing support that was informal and for the whole family. To lose a child and feel that there is no help available to you is frightening and leaves you feeling isolated and vulnerable. We set up The Benjamin Pritchard Foundation – Be More Ben to enhance bereavement support and services for parents, families and siblings who have lost a child under the age of 18.