THE mother of a York schoolboy who died of a brain tumour says she hopes his legacy will be to help other children avoid the gruelling treatment he endured.

Marie Hughes, of Dunnington, has spoken out in an emotional video about her son Oscar, who died five years ago of medulloblastoma, aged nine.

She said Oscar was "making that mark on the world that we always knew he would make", thanks to the creation after his death of OSCAR’s Paediatric Brain Tumour Charity, and he would have been "very proud" of its extraordinary achievements.

The organisation is giving The Brain Tumour Charity £75,000 to co-fund a ground-breaking clinical trial, known as SIOP PNET5, which aims to find out if children with Oscar’s illness can receive less toxic chemotherapy and lower radiotherapy doses without reducing their survival chances.

Marie said Oscar’s treatment regime left him unable to take part in his beloved football or tennis, go to school regularly or even to play with his three brothers. He also lost his hair following chemotherapy, which he found particularly hard to bear emotionally.

“If he had been on the PNET5 trial and he’d been able to have less chemotherapy, less radiation, there’s a potential that he could still have done some of the sport that he was doing,” she said.

“He could have maybe gone to school more, he might not have been so tired.

“The idea is that when our children go through these treatments, you want it to be as normal as possible. You want them to suffer as little as possible.

“For Oscar to have been able to still play with his brothers and not lose all this energy as well – that would have meant everything to him.”

In the end, Oscar’s tumour recurred and there were no further options, and Marie said: “If I had known he was going to die I would never have let him go through that treatment, because it was really that horrible.”

The video includes moving footage of Oscar being cheered at Dunnington Primary School sports day by fellow pupils, who walked behind him chanting his name.

Under the trial, every diagnosed child in the UK will be offered a ‘biomarker’ test, providing doctors with a detailed molecular profile of each child’s medulloblastoma and paving the way for more targeted therapies in place of a ‘one-size-fits-all’ approach.

Professor Steve Clifford of Newcastle University, lead researcher on the trial, said it was an "absolute landmark" because for the first time children were not all being treated in a very similar way. Marie said testing cost about £2,000 per child but it was money well spent.

Meanwhile, fundraisers will climb Scafell Pike next weekend in a Family Challenge ascent in support of the charity, with some spaces still available by going to www.oscarspbtc.org/charity-events/familychallengeweekend-2/

  • The video can be seen by going to https://youtu.be/U39FIRiJe_c