Ronnie Hood, from Sudbury, does not qualify for ONC201 because his tumour is a millimetre too small.
Ronnie, 11, pictured in January this year before he was diagnosed with a rare and aggressive brain tumour
After being given just nine months to live, the youngster went through chemotherapy and radiotherapy sessions which helped shrink the tumour, but only very slightly. Mr Hood, 58, and Ronnie’s mother Vicky, 50, took their son to be checked out in February 2023 after he said his neck was hurting and he had a tingling feeling in his fingers.
"I felt guilty because it took nearly a year for him to be diagnosed but it's very aggressive and very, very rare, so even if we’d caught it earlier it wouldn't have made a difference.
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