Ben 's Story

Despite being a fit, healthy and active young boy, Ben was diagnosed with a rare and aggressive brain stem tumour, DIPG, when he was 7 years old. The tumour was inoperable and incurable and he died just six months later.

After he died, we found there was very little ongoing support for child bereaved parents and even less for siblings and other family members. We set up our charity “Be More Ben” to provide the support we needed that wasn’t available for, things like ongoing counselling and groups to meet other child bereaved families.

We are 8 years on from losing Ben now. Our lives have changed dramatically in this time. Ben has two younger brothers who he never got to meet and his big sister is heading off to university later this year.

We are incredibly grateful for the life we have but as much as our lives go on, there is always a space which can never get filled and we are consumed with the sadness and grief of not having Ben here every single day.

Being able to come to Ben’s Retreat this weekend has come at the perfect time. When you run a charity, it is very easy to overlook your own personal experience and put your needs to one side. We are so grateful to Tom & Jo for giving us the opportunity to reflect, rest and relax in their beautiful lodge.

Thanks guys xxx