Ben's story

Ben’s dad, Garry, explains:

“Ben was growing up to be a likeable, cheeky character. He had plenty of friends and we are lucky to have a lot of them still around us now, checking in. He had the most infectious laugh and he always had a smile on his face, no matter what he was going through. Ben’s main passion was football – he loved Charlton Athletic and was a goalkeeper for Cray Valley under 18s. They often said Ben was one of the best keepers in the league.

“Ben must have been about 15 when he started showing symptoms: he was being sick and losing a bit of weight. We were taking Ben regularly to hospitals and doctors, trying to get him checked, but because it was during the pandemic nobody would do much for him – there were lots of rules and regulations about what they could and couldn’t do.

“Ben then started to get blood clots coming from his nose, so again we went up to the hospital and fought hard to get something done. Eventually one doctor asked what had been happening, and by this point it had been going on for around 18 months. They admitted Ben there and then, and booked him in for a scan. Without that doctor listening to us it might have been even longer until we found out. The scan showed that 80% of his liver was already cancerous, and sadly it was too late to do much for him. Just seven months after that diagnosis, Ben sadly passed.”

But Ben’s diagnosis didn’t diminish his spirit, and he was surrounded by the many people who loved him right up to the end.

“We didn’t tell Ben that he was going to die until much later. In the end, one of the doctors asked if we wanted them to talk to him, and we agreed. When they had finished speaking about the treatment not working, Ben just looked at us and said: “So am I dying?” We tried to deal with it the best way we could. We told Ben that he could still try immunotherapy tablets, but there were lots of side effects. He said: “OK, we will start them tomorrow.” Just like that, totally in his stride. Ben was the bravest boy I know. To be told you are dying, I would have crumbled there and then. He just got on with it.

“Ben was constantly smiling right up to the end. He had myself, his mum and his sister all around him when he passed away. Lots of his friends, coaches, people from school and family came to see him during the week. Everybody that mattered to Ben got to see him before he passed.”

Towards the end of his life, Ben decided to be at home with the community nurses coming to him. But after he died, Ben and his family came to stay in Demelza’s bereavement suite, giving them the chance to be together for a few more precious days.

“The night he passed, he was brought to Demelza. We were offered a room opposite Ben so we could stay there and be with him over the weekend, and see him and sit with him as often as we wanted to. If Ben had just been taken away, and we were left at home, I don’t know what we would have done. To have that little bit more time, it made that transition of Ben being here to not being here a little bit easier for us. At that time any little bit helps. We just didn’t want Ben to go.

“Demelza did some memory making with us – we made handprints and hand casts. There is a cast of our hands holding Ben’s which we have displayed in our front room for us to look at daily. We also had Ben’s fingerprints made into jewellery. Because we don’t have Ben physically with us anymore, it’s important to us that there is still a part of him here. The day after Ben had passed, some of the family came to see him at Demelza, and they got to make handprints and memories with him too – it was nice that others who loved Ben could be involved too.”

It’s often difficult for people to talk about death, especially losing a child. But for Garry, talking about Ben and sharing experiences with other bereaved families has been essential to navigating his grief.

“Obviously we miss Ben greatly, and I am slowly finding my voice to start to speak about him. Demelza offered me counselling during the first year after Ben had passed, but being a typical man – we don’t talk, or it is very rare if we do.

The first session I was a bit quiet, I was trying to get a feel for it and just tell them about Ben. I opened up a little bit more in the second session, and then by the third and fourth sessions, we ended up running out of time and I was still talking, it all just seemed to flow out of me. That was really good for me at the time, because I was in a bad place, not talking to anybody. I would be in work with my headphones on so nobody would talk to me – I just didn’t want to deal with the world anymore. I was really down, but they pulled me back from that, just by talking.

“I’m part of the dads and male carers bereavement group at Demelza, which has been nice. A lot of the time you just have to keep going and pretend everything’s alright – you put on a mask. But the groups give you the chance to drop the mask for a while.”

Taking part in these communities has helped Garry see how far he’s come since Ben’s death, and he’s now using his own experience to support other bereaved families.

“It’s four years since Ben passed, and when I see other parents who’ve lost a child, I can see how much they are struggling. We were at that point a couple of years ago, but now we have learned to navigate our way through life, taking each day as it comes. For us, talking to other parents who have lost a child gives us the strength to help them.

“What Demelza did for us was truly amazing. You don’t want to have to go through what we went through, losing your child, but without places like Demelza I am not sure how people would cope.”