25/01/2026
I'm writing this today as Joss' dad. Not as a charity trustee. Just his dad.
Fifteen years ago, I took a day off work to take Joss to the Hospital in Oxford for what was meant to be a routine — a minor operation to relieve pressure in his skull caused by his DIPG brain tumour.
On the drive there, we sang. Loudly. We sang The Candy Man together, grinning, pretending — just for a while — that life was normal. And for that drive, it did feel normal.
Of course we were frightened. But this was a day procedure, and we were told it had gone well. When Joss came back to the ward, he was himself again — cheeky, full of life. As if nothing had happened.
We talked. We laughed. He looked at me with that familiar glint in his eye and said, "What are you doing here, ugly?"
He ate his favourite chocolate. Drank his Tropicana orange juice. And then, without warning — he had a seizure and stopped breathing.
What followed is impossible to describe. Alarms. Doctors. Nurses. Tubes. Hands everywhere. Our poor boy looking helpless. A moment that fractures your life into before and after. A living nightmare you never wake up from.
They intubated him immediately. They did everything they could. But Joss never regained consciousness.
At 12:03am on the — 25th January 2011 — our son Joss died.
Making the decision to turn off his life support was the hardest thing my wife and I have ever done. It still haunts us. While the angels gained a beautiful young boy, our world was ripped apart as we watched the life leave our child.
And then we had to tell Jamie. He was seven.
I say we, but it was Dianne who found the courage that day. She told him his brother wasn't coming back. I stood outside the door, sobbing.
I cried that day in a way I didn't know was possible, and have ever since. I cry for Joss. I cry for Dianne. I cry for Jamie. Especially at this time of year, the pain consumes our tiny family.
The pain is relentless and debilitating. It changes how you see everything.
Jamie, bless him, struggles more than you can imagine. He didn't just lose his brother — he lost his idol. We can never replace the future he should have had with Joss.
No family should ever have to feel this lost, this hurt.
We have to find a cure for this brutal brain tumour — or at the very least, kinder, less toxic treatments. Dianne and I will spend our lives doing everything we can to stop other parents from standing where we stood, making the decision we were forced to make.
Joss Searchlight exists because Joss existed. It is his legacy.
