THE family of a well-known Chepstow teenager who has campaigned tirelessly for charity despite undergoing debilitating chemotherapy have called on the government to fund more research into his condition.
Noah Herniman, 16, suffered chemical burns and nerve damage, and developed neuropathy from gruelling chemotherapy, after he was diagnosed with a low-grade glioma in March 2021.
Despite the brutal side effects, the treatment had no effect on the tumour, and finished six weeks earlier than planned, in April 2023.
Results of his latest scan show the tumour has continued to grow and Noah is due to start another course of chemotherapy, this time with two types of drugs.
The teenager - who last year was crowned Young Person of the Year at the 2022 South Wales Argus Pride of Gwent Awards - also has neurofibromatosis (NF) – a disease which causes tumours in the body that can grow under radiation, making radiotherapy impossible.
Mum Shelley said: “The doctor told us the only treatment available was chemotherapy, which proved brutal for Noah.
“He suffered from severe nerve damage which meant he sometimes needed a wheelchair to get around and became physically sick.”
She explained that Noah was "now of an age where he can make his own decisions".
"Noah has agreed to try chemotherapy again as it is his only choice, but if he becomes as sick as the last time, he said he will choose quality of life over prolonging it," she said.
"As hard as that is as a parent – we know we must respect his decision.”
Ms Herniman spoke of having conversations "you never expect to have with your children".
"Noah has made his wishes clear should his brain tumour impact him in a particular way," she said.
Brain tumours kill more children and adults under the age of 40 than any other cancer.
However, just one percent of the national spend on cancer research has been allocated to brain tumours.
Noah's family are now campaigning alongside the charity Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate.
The charity is calling on the UK government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
Brain Tumour Research wants the government to recognise brain tumour research as a critical priority.
Mel Tiley, community development manager at Brain Tumour Research, said: “For too long governments have put brain tumours on the ‘too difficult to think about’ pile.
"Five years after the government announced £40 million for brain cancer research, less than £11 million has been spent. Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.”
To sign and share the petition before it closes at the end of October 2023, go to braintumourresearch.org/petition
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