Joshua's story

Donna and Duncan, Joshua’s parents, explain what Demelza’s support has meant to them:

“Demelza gave our family love and support when we needed it most, after the heartbreaking loss of our only child, Joshua, who passed away from childhood cancer in June 2024.

“Joshua is the best and strongest person we will ever know. His zest for life and adventure was endless. He loved exploring, and the three of us enjoyed nothing more than just being together — camping in Cornwall, going on family bike rides and spending time at the beach.  He was into everything boys his age enjoyed – building Lego, swimming, playing computer games, learning guitar, making silly TikTok videos and was part of the local Scout group. He loved deeply and loved spending time with family. We were just a normal family, living a normal life. We didn’t know we were making memories; we were just having fun.”

But suddenly, everything changed.

“In April 2022, out of the blue, cancer broke into our lives. Joshua, who was 10 at the time, was diagnosed with a rare form of bone and soft tissue cancer called Ewing Sarcoma, which only affects around 26 children a year in the UK. He was in Year 6 and looking forward to starting at the local grammar school later that year when everything stopped, and we were thrown into an alien world of scans, tests, biopsies and medication. In all, we spent over 270 nights in various hospitals. Despite everything he went through, Joshua didn’t complain once. In many ways, he kept us going.

“Joshua endured over 20 rounds of chemotherapy, two major surgeries, more than 30 sessions of radiotherapy, around 100 blood transfusions, four stays in intensive care, emergency dialysis and sepsis more times than we can remember. He lost the ability to walk three times and showed endless strength getting back on his feet. Despite all of this, he never complained. Even when he felt so poorly, he’d still give us a thumbs up, which soon became his trademark.”

For a while, it seemed like the cancer had gone, and normal family life resumed.

“After 10 months of frontline treatment, against all the odds, in January 2023 we got the news that he had no evidence of disease. We embraced life and made up for lost time.  We became experts in living for the now — living life with no regrets. Heartbreakingly, just six months later Joshua’s cancer returned aggressively, and despite every effort, he became so poorly from treatment side effects that there was no more treatment available. We lost him just four days before his 13th birthday. He’d so desperately wanted to be a teenager, but his cancer was just too aggressive.”

It was at that point, Demelza came into their lives.

“Although we were aware of Demelza, we hadn’t known much about the services they offer and the way they support children and families. We initially said no to accepting help from Demelza, as we thought that receiving support from a children’s hospice meant accepting that our son was going to pass away — and we never gave up hope. Of course, we now know they offer so much more than end of life care, and we wish we had said yes to help sooner.”

Demelza offered Joshua and his family ways to make the most of their remaining time together.

“In the last week of Joshua’s life, we met some of their wonderful staff at our home where we did some memory making with Joshua. We did handprints together and now have an amazing cast of our hands holding his – it is such a special and personal keepsake and means we still get to touch his hand, even though he’s not here anymore. We’re so grateful to the staff member that created that cast for us with such care and patience. It wasn’t an easy thing to do, but she did it beautifully.”

When Joshua died, Demelza’s bereavement suite meant Joshua’s family were able to spend as much time with him as possible.

“After we lost Joshua, we were given the chance to make use of the bereavement suite — a place of calm, care and kindness, where we and our family and friends could say goodbye in our own time, surrounded and supported by people who truly understood. It also meant that Joshua didn’t have to go straight to a funeral home on his own.

“We were able to spend a few extra days with him, which gave us time to be with our thoughts, with Joshua and without having to make any decisions. We were wrapped up in care by the team there — we were looked after, had a bedroom to sleep in and could spend as much time with Joshua as we wanted, as could our friends and family. Being there also meant we got to spend time with him on his birthday, which meant the world to us. The bereavement suite is a place that shouldn’t be needed, but we are incredibly grateful that it was there for us as a family at the worst time.”

Since then, Donna and Duncan are still supported by Demelza and have dedicated themselves to helping more families like theirs.

“We attend all the bereavement memorial events hosted at Demelza’s beautiful space in the Kent countryside, where we can meet other bereaved parents and talk about Joshua and hear about their children. We’ve also helped to organise a bereavement café for parents who have lost their children to cancer — a space where we can speak freely, share stories, and support each other. That link with other parents is invaluable, and the support from trained professionals stops you feeling quite so isolated. Demelza have also provided counselling to us and extended support to our wider family, as a loss like this affects so many people.

“We honestly don’t know how we’d have got through the last 17 months without Demelza.  Their support has meant everything. As another Christmas approaches, it’s a real comfort knowing they’ll be there for us for as long as we need them.

“Because of Demelza, we got to spend those extra few days with Joshua in the bereavement suite, we have that amazing cast of our hands, and we can continue to remember Joshua with a group of people who understand how it feels to lose a young child.”

Their future as a family is different now, but Joshua will always be a part of it.

“It’s important for us to keep talking about Joshua — he didn’t get to see the world, but we want the world to see him.  Every day we grieve the future that was taken from Joshua and from our family. He is, and always will be, our ultimate hero and the person who taught us that cancer never wins — love does.”