A Brit with an inoperable brain tumour is pleading with MPs to reconsider their rejection over the Assisted Dying Bill as it’s his ‘only wish to die with dignity.’
When Shelley Herniman noticed her once energetic teen suddenly appearing fatigued and off his food, she simply put it down to boredom.
The 50-year-old, growing concerned, reached out to fellow mums to see if they were noticing the same pattern with their kids, too.
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And, as they were, the train guard believed she had nothing to worry about.
But then, her son, Noah, now 20, began quickly losing weight, coupled with memory issues and struggling to breathe at times.
It turns out he was suffering from an inoperable brain tumour that, despite chemotherapy to halt progression, will one day grow again.
The aspiring actor is adamant that when the time comes, he wants to “die with dignity” and has been left “heartbroken” over the rejection of the Assisted Dying Bill on 11 September.
“There is no way in hell I am going through a slow or painful death,” Noah, who lives in Falmouth, told Need To Know.
“I don’t care if I have to go to Switzerland, or what laws I break.
“But when it’s my time to go, I want to die on my terms with dignity.
“I’ve backed that I want to go through assisted dying ever since I was diagnosed.
“While my mum wasn’t on board, understandably, it’s not her decision to make.
“I was genuinely hopeful that the bill would pass.
“It’s the right thing for me; for everyone who has to suffer.
“And so I’m really angry that I don’t get the decision to make this choice over my own life.”
Noah, who suffers from neurofibromatosis type one, a genetic disorder that causes non-cancerous tumours to grow, only got his diagnosis after a routine MRI scan.
In July 2021, he and his mum were delivered the earth-shattering news.
He said: “My mum was completely speechless and in a state of shock.
“I, on the other hand, had prepared myself for the worst.
“You’re never called in for good news.
“I asked if they could operate on it – it was a no.
“I asked if I was going to die – and I was told ‘most likely’.
“The only option of hope I had was chemotherapy, which would work to halt growth of the tumour.”
Noah underwent four gruelling years of the treatment, which he called “hell”.
He said: “I suffered every single side effect under the sun.
“I had burns, hair loss, nausea, lost my appetite, had to be fed via tube and was left in a wheelchair.
“I feel my teenage years were robbed away from me.
“I’ve undergone extensive chemotherapy and I refuse to go through any more.
“It’ll only continue to grow regardless of what I do.
“And when it does – I’ve made my final decision.”
Since his case is currently stable, Noah has started university and hopes to make the most of life before an undoubtful future.
His mum, Shelley, never used to believe in the Assisted Dying Bill until her son’s battle.
She said: “I’ve done a full circle.
“I was totally against it at first.
“Even when Noah said it to me, I told him there was no way he would ever be going through with that.
“I brought him into the world; I don’t want to agree to take him out of it.
“But the more time went on, seeing how much he suffered through chemotherapy, my opinion changed.
“I’m always hopeful that it won’t ever grow again by some miracle and it’s a decision we’ll never have to face.
“Noah is adamant that this is what he wants.
“And who am I to strip him of the freedom over his own body?
“It’s something I wish the MPs who voted against the bill would question, too.
“I’ve recently watched a family member die on palliative care, and it wasn’t pleasant.
“I certainly don’t want Noah to go like that.
“It’s not about those with disabilities, or someone deciding to end their life because they’re fed up; it’s about people with terminal illnesses.
“Noah’s fighting for what he believes in – for the future of others, himself and those who are unable to benefit and die on their own terms.
“He wishes to have a full life and have a successful career as an actor in television and film.
“He dares to dream, most importantly.”
Noah added: “In the time I have left, I’d love to become the next Doctor Who or at least become a famous actor.
“Most importantly, I want to make the most of being able to go out and live my life before time is up.
“And, when I choose for it to be so, I hope my family would understand that is the best choice for me.”
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