Noah Herniman was just 15 when he was told he has an inoperable brain tumour
03:00, 14 Feb 2026
Noah Herniman, from Chepstow, has an inoperable brain tumour(Image: John Myers)
It seems unfathomably cruel to sit in front of a 19-year-old who has already had to plan his funeral and has drawn up a plan to end his life.
Noah Herniman was just 14 when, in 2019, he spotted a tremor in his arm. Then, after a drawn out process of testing, he was sat down in a room with his mum in June 2021 and he was told the cause was a brain tumour and it was inoperable.
His tumour can’t be cured, or removed, but he was told chemotherapy could help manage it. His first round of chemo lasted 74 weeks.
In that time his weight plummeted and he needed feeding tubes and a wheelchair. He then started a second 74-week course of chemo.
When they were first told about the tumour, in his brain stem, the family were told that even a half a millimetre growth would be dangerous. Despite all he has been through the tumour is now 38.2mm in size.
There is no prognosis or timescale for Noah but there is one thing he is sure of, which is that he wants to be able to end his own life if it gets to the point that his condition worsens to such a degree he cannot do things for himself.
In a few weeks Senedd members will vote about the assisted dying legislation currently making its way – slowly – through Westminster and Noah wants his story to be at the front of their minds.
Noah’s dad, Nigel, 59, has a condition called neurofibromatosis (NF1), which causes tumours to grow along nerves, and when Noah was born he was told because he too has it he would need lifelong scans.
In March 2021 a mass was spotted on his brain and he was then told it was an inoperable tumour in his medulla, his lower brainstem.
He asked his consultant: “Is it going to kill me?” And she replied: “Well, yes, most probably.” For our free daily briefing on the biggest issues facing the nation, sign up to the Wales Matters newsletter here
The chemo was brutal and incredibly debilitating. By September the side effects of the tumour meant he couldn’t swallow and his gag reflex was almost non-existent. His existing NF1 condition meant he couldn’t have radiotherapy so he had chemotherapy.
“He was in a wheelchair, had feeding tubes, he was a bag of bones – and I mean he dropped 10kg in four weeks – and he was poorly, his voice changed, everything. His life was gone,” his mum Shelley, 54, said.
By March 2022 he had nerve damage and weakness on his left-hand side, which meant he had to use a wheelchair, and any further treatment was halted.
A month later he was told the chemotherapy hadn’t worked and his tumour had grown.
Anything under 2mm is considered “stable”, Shelley explained, but when his tumour was first spotted the family were told Noah couldn’t even afford half a millimetre’s growth.
After his first round of chemo his tumour had grown by 1cm. Despite a second gruelling round, a scan a few weeks ago showed it is now larger once again.
“It’s got to that point where he knows that they can’t change it now,” said Shelley.
“[Chemotherapy] was such a long hard process and it affects so much of their life. Their childhood is completely obliterated by it,” she added.
As a teenager he was treated on a children’s unit but the man in front of us is getting his breakfast ready, making a round of teas, and sharing the tips to make the best hot chocolates.
Shelley said: “He has had to watch toddlers die and that affected him.
“He lost one of his closest friends who he met through treatment just before Christmas – she was the same age as him. It’s been really tough on him but he’s been brilliant.”
Despite all he has been through he has won numerous awards for fundraising and, despite missing a huge chunk of school due to his treatment, he sat and passed five GCSEs which he passed with B and C grades.
The Terminally Ill Adults (End of Life) Bill, colloquially known as assisted dying, would make it legal for over-18s who are terminally ill to be given assistance to end their own lives in certain circumstances.
As it stands, in theory, assisted dying could be made legal but effectively banned in Wales depending how the vote later this month goes. While the assisted dying law falls under Westminster’s jurisdiction the Senedd has to agree to it before it applies in Wales.
A Senedd vote is due to take place on February 24 but it is yet to finish its Westminster journey. While MPs narrowly backed the bill its journey through the Lords has been vastly delayed.
While it is unlikely Senedd members can stop assisted dying becoming legal for terminally-ill people in Wales there is the prospect that if the bill does pass all stages in Westminster but then the Senedd does not back it the service would not be available on the Welsh NHS.
It has raised questions about whether private operators could offer the service in Wales and what that means for people potentially travelling across the border to die in England.
When the current Senedd had a free vote on assisted dying in October 2024 they voted against it and there has been vocal lobbying on both sides.
Noah is clear that he wants Welsh Senedd members to ensure the same rules are in place in England and Wales.
His mum, who was initially fiercely opposed to assisted dying, has during their experiences changed her mind.
They are now lobbying for Senedd members to back the so-called legislative consent motion.
On the flip side more than 250 health care professionals recently signed a letter urging MSs to vote against the law saying it was “deeply flawed” and there has been “inadequate” oversight.
Noah said since his diagnosis he has researched assisted dying. “One of the first things I’d said was: ‘If I get to the point where I can’t do stuff on my own anymore then take me to Switzerland’.
“Mum’s response was: ‘I’m not going to jail for you’,” he said with a smile. Noah admitted he had a dark sense of humour before his diagnosis, and it’s got more so in recent years.
When assisted dying began its legislative journey he was immediately in favour but said safeguards are essential.
“I think there should be safeguards, they should absolutely do all that, but it shouldn’t take absolutely years to do because by that point they should have the resources to do it in a few months.
“I don’t really think that’s fair on the people who are suffering, who want to go via Dignitas, whose families have to watch them suffer.
“Look at it this way: if you’ve got someone who’s got two years, say, but it’s two years in absolute agony where they can’t walk, they can’t breathe, eat anything on their own.
“I don’t really know if words can describe that but apart from saying that you can’t breathe on your own, can’t eat or walk or drink on your own, you can’t even go to the toilet on your own, need constant medication, need constant pain relief. If someone has got on to that point where they’re in a state of constant suffering where they can’t even leave their bed and they’ve got weeks or months left before passing on why would you stop them?
“If there’s no other way to help them why would you not let them take that route to stop the suffering, to stop pain? If they’re going to die just let them do it with dignity.”
Mother and son both agree the law has to be the same in England as it is in Wales.
Noah said: “If it’s gone ahead in England and we’re supposed to be the UK let me ask you this politicians: what is wrong with you?
“Why would we, as a nation, want our citizens to suffer through hell just because we want to stand apart from the crowd, just because we want do this differently? How is that fair on anyone?”
Shelley said as they live in Chepstow, and can see England almost from their front door, they were one of those areas where the different pandemic rules were acutely obvious. A law which is different between two countries would, they believe, not be fair.
“I’ve gone full circle. I’ve come from absolutely [backing assisted dying] to the fact I’ve seen people die, I’ve see them die slowly and desperately sadly when they could have been helped,” said Shelley.
“They could’ve been in a better position. There’ll be lots of people that have never been in a situation where they’ve had to think about it.” Now, for her, the pros have outweighed the cons.
She said she isn’t convinced the nuances of the law are being understood, even by those due to vote on it, such as the law coming in only at the end of someone’s life. Noah agreed.
What, I asked him, is his message to the politicians soon to decide on this huge, emotive, and divisive issue?
“Have you got any family members in that sort of circumstance? Do you know how it feels to watch someone suffer through that or even to be the one suffering through that?
“To be in a constant state of suffering, in pain, where you’re scared you won’t even be able to breathe on your own, feeling like every day could be the last day in a very painful way?
“Would you rather if this were you? Would you rather a quick, painless death? Or would you rather a slow one drawn out with suffering? You wouldn’t put an animal through it so why would you put a person through it?”
That has, he said, been his life at points.
“There have been times I’ve felt that way where I sometimes struggle to breathe when I have that fear. I struggle with my appetite and I think: ‘Oh great – brain tumour growth’.
“I’ve been lucky enough that it’s been more side effects to an extent but I personally think if there’s people who are getting those side effects stronger than I am and they can’t cope and they’re in agony, terrified, and alone or without family members. Why would you want them to go through that hell when they’re going to die anyway?
“Why make them go through a long, suffering death when you could give them a quicker, painless way out if there’s an alternative?”
Without a UK law he said if his condition worsened, and he was told there was nothing more to be done, he would look into going to Switzerland, “as a last resort if I got to that point where I was starting to suffer and there was nothing really they could do and I knew that it just gets worse as it went on”.
He added: “Terrified as I am of dying I’d also rather, myself, I’d rather die quickly and painlessly than suffering a slow, drawn-out death because it gets to a point where dying like that would become hell in itself.”
The choice facing him right now could leave his family facing prosecution. Is that something that causes him further worry?
“To an extent. I know it sounds selfish but if it gets to that point then I’d want to do that anyway.
“Much as I wouldn’t want my family to be suffering or in trouble it gets to an extent where [you think]: ‘Why?’. What is the point of going on suffering when you’ve got months, weeks left and you can’t do that anymore?”
His mum has, she admitted, gone full circle on her position.
Shelley said: “He’s always been very vocal, very honest about how he actually feels.
“It was a strange conversation to have but he said: ‘I don’t want to suffer’. He said: ‘If it comes to it and there’s no other options I want to go to Switzerland’.
“I dismissed it. But as time progressed he was quite adamant that’s what he wanted to do.
“I’m his mum. I gave birth to him, I brought him into the world – I certainly don’t want to take him out. So that in itself, it just didn’t seem right.” But she said her son’s condition progressing means now she has shifted. “It didn’t seemed right that anybody’s got the right to actually take that away from someone.
“As time’s progressed Noah’s been very adamant about what he wants and believes in what he wants so we’ve done research. There’s absolutely no way I would let him go to Switzerland on his own. It wouldn’t happen.
“There’s no way I’d let him go off on his own.
“I just think I need to be there for my son and if that’s what he needs to choose, if that’s the way his life is going end – it obviously will be towards the end – then that’s exactly what I’ll do.
“If that means I have to spend the rest of my time locked up then I would not let him go through it on his own.”
She added: “We’ve seen, unfortunately, the tumour grow.
“Eventually, bit by bit, he will deteriorate to a point where he could possibly be locked in so he won’t be able to communicate with us.
“He won’t able to do anything for himself.
“So you’d be left with a situation where he could probably blink and that might be it. With Noah it is his core functions which are being affected by the tumour so that’d be breathing, heart, the lungs and everything.”
Their day-to-day life is continuing, because it has to. When we meet Shelley has just finished an early shift on the railway and they are decorating the hallway in their home. Noah’s brother is upstairs studying on his university work.
Throughout his treatment, Noah has raised thousands of pounds to pay for Noah’s Retreat, a holiday lodge for young people in the same position as him. He has written his bucket list – and ticked off getting his own Dalek. Another of those five things he wanted to achieve – to pursue an acting career – is coming true too as this September he will go to university to study drama in Falmouth.
For Shelley that’s both something she wants for her son but also terrifying because, as any parent knows, all you want is for your kids to be happy and healthy and while going to university is something Noah is desperate for she knows he will have to return to Wales for regular treatment and worries about what happens if he falls ill while more than three hours away.
“It’s really, really bizarre because for me I’ll have good days, bad days, brilliant days. I’ve got a 19-year-old who is an absolute miracle – he’ll be 20 in a few weeks’ time and he’s brilliant. I treasure every moment.
“It’s been difficult but it breaks my heart, it really does, when I think of the things that he’s missed out on, the friends that he has lost, which is inevitable.
“For me as a mum there is not a day that doesn’t go by where I say to my husband: ‘I just can’t believe it. It doesn’t seem real’.
“We have these conversations, we’ve had to plan funerals, but we’ve got to a point now where we have to laugh at these things because we have no choice.”
For Noah he doesn’t know what the future holds and there is no timescale he can be given.
Asked if he feels angry this is the sort of choice he, a 19-year-old, should be facing, he said: “It’s got on to the point where I’ve just accepted it now.
“I mean it’s still s*** but it is what it is.
“I do have days where I think: ‘How the hell have I got this?’ That’s the universe I suppose.”
