AN OPEN LETTER TO THE HEALTH SECRETARY.
Dear Health Secretary,
My name is Ellie Thompson. I am Billy’s mum.
Billy was four years old when he died from DIPG, an incurable childhood brain cancer, on Easter Sunday, 31 March 2024.
He was funny, brave, full of life and completely adored. He loved superheroes, rugby, Ghostbusters and Queen.
He should be seven years old now.
Instead, I’m writing to you because other families are facing the same devastating reality.
When Billy was diagnosed, we were told there was no cure.
We watched him endure radiotherapy, steroids and the gradual loss of everything that made him independent.
We watched him suffer. And then we held him in our arms as he died. Fighting for his peace. We felt abandoned by the health care system, who failed to be there when we asked, when we needed.
But what haunts me isn’t only how Billy died. It’s everything that came before it.
The lack of treatment options. The desperate search for something that might help. And the knowledge that other families are facing the same nightmare.
Since Billy died, we’ve established Billy’s Battalion and campaigned alongside Brain Cancer Justice. We’ve taken our children’s stories to Parliament. We’ve written letters. We’ve begged for change. But we cannot do this alone.
We need dedicated, full-time national leadership for brain cancer. Someone to drive research, improve access to trials and make brain cancer a priority.
A National Brain Cancer Lead won’t bring Billy back. It won’t undo that Easter Sunday, or the black van that arrived with a stretcher and a body bag to take my little boy away.
But it could help change the future for families who haven’t yet heard the words that destroyed ours.
My son was four years old. He didn’t get to grow up. The very least we can do is fight for the children who still might.
Please give brain cancer the dedicated national leadership it deserves.
Ellie Thompson
Billy’s Battalion
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