'There's no miracle cure for our brave Ronnie'
· BBC NewsGeorge King
BBC News, Suffolk
The parents of a boy fighting an incurable tumour said there remained “no miracle cure” despite him being treated with a specialist drug that cost £700 per pill.
Ronnie Hood was diagnosed with a diffuse midline glioma, external in March after doctors were unable to remove the entirety of a tumour growing on his spine and brain.
The 11-year-old, from Sudbury, Suffolk, is now receiving doses of the privately-sourced ONC201, external drug after £50,000 was raised by the community.
But his dad Nick, managing expectations, said: “It’s bought us some time and we are hopeful, but there is not necessarily going to be any great change.”
Ronnie received his diagnosis more than a year after Mr Hood, 58, and Ronnie’s mother Vicky, 50, first took him to be checked out in February 2023.
He had complained about pain in his neck and a tingling feeling in his fingers, but it was initially put down to his constant gaming.
The schoolboy was sent for physiotherapy and eventually an urgent MRI roughly a year later, before an eight-hour operation revealed his parents’ worst fears.
After being given just nine months to live, the youngster went through radiotherapy sessions which helped shrink the tumour, but only slightly.
The reduction, however, was enough to mean he would not qualify for ONC201 - an experimental drug used to treat serious brain tumours in young adults.
Mr and Mrs Hood have since sourced the drug – which is not available on the NHS, external - themselves after tens of thousands of pounds were raised.
“Luckily we raised enough and I can’t believe how kind everyone has been, they have just been so amazing and have really been rallying around,” said Ronnie’s mum.
“Everyone always loved Ronnie and he always made everyone laugh.”
Ronnie, who is not allowed to have any more radiotherapy sessions and now needs a wheelchair, has so far received four doses of the ONC201 drug.
“We haven’t noticed any change yet but until we get some smooth sailing we won’t really know what it is doing and it can take three months to work,” said Mr Hood.
“This is no miracle cure but hopefully he will be a bit more comfortable and maybe get some more movement back in his arms and hands. We have to take it day by day.”
But despite the adversity he faces on a daily basis, Ronnie continues to remain upbeat.
Mrs Hood said: “Every day is different because he has his good days and his bad days so until we can get this balance right with him… but he is so positive bless him.
“He still tries to laugh even though he can’t do what he wants. He is desperate to go back to school but he can’t, which is heartbreaking.
“All we can do is be positive because there is no point in being down about it because that doesn’t get anyone anywhere."
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