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Daniel Caplan was 16 when he was diagnosed with diffuse midline glioma, an aggressive type of brain tumour. He passed away just seven months later. To honour his memory, his family have set up the Doing it for Daniel Foundation. They aim to improve the outlook for young people with brain tumours, in Daniel’s name.
“During his illness he was the bravest boy”
Daniel was vibrant, popular and full of life. He loved music, football and having fun with friends, and he planned to study International Business at university. But, in May 2020, just before his 17th birthday, he began to complain of headaches. His family also noticed he was dragging his right foot. He was taken to the GP and immediately sent to hospital where he had a CT scan. That night, he and his family were told that a mass had been found on his brainstem. A further MRI scan revealed a 5cm tumour and doctors suggested Daniel undergo a biopsy. Afterwards, Daniel’s mobility declined, and his motor skills were badly affected. A week later, they were told that Daniel had an aggressive brain tumour called diffuse midline glioma, or DMG, a terminal brainstem tumour mostly affecting children. It’s also known as DIPG.
Daniel’s mum, Alison, says: “We had spent the week researching brain tumours so were aware we were being given the worst possible diagnosis. But, when we asked about treatment options, it was hard to believe there weren’t any. Daniel started palliative radiotherapy, with the intention of slowing the tumour’s growth. But we felt a sense of hopelessness from the moment he was diagnosed. We knew he was dying. During his illness he was the bravest boy.”
His family secured experimental drugs from overseas and Daniel was accepted onto a clinical trial, but his cancer progressed so quickly he couldn’t take part. Daniel always hoped he would get better but understood the odds were against it.
He died on 30 November 2020, seven months after his diagnosis.
“We want to see a time when a DIPG diagnosis is not a death sentence”
Daniel wanted to raise money for brain tumour research, particularly for his type of tumour, to give others the chance of treatment he didn’t have. To keep his memory alive, and honour his wishes, Daniel’s family set up the Doing it for Daniel Foundation. They want to see a time when a DIPG diagnosis is not a death sentence.
The Foundation is generously supporting the brain tumour research being undertaken by Professor Chris Jones, leader of the ICR’s Glioma Group. He and his team aim to find the genes that are driving development of these cancers and identify ways to translate these findings into new treatments for children with these tumours. Support from the Doing it for Daniel Foundation will enable advances in this important work.
If you would like to get involved and support our childhood cancer research, please contact Nicola Shaw in the Development Team, call 020 8722 4227 or email [email protected].
Watch Nicola's video and learn more about her work with our Family Charity Partners.
