'Most people don't talk to me anymore' - Boy, 16, 'ghosted' after being diagnosed with brain tumour

'Just because I'm balding and in a wheelchair now doesn't mean I'm not a normal person'

Noah Herniman has an inoperable brain tumour, but that isn't his biggest concern right now. Neither are the GCSE exams he'll soon be sitting.

What concerns the 16-year-old most are his Dr Who scripts. Noah is a Whovian. He loves the classic sci-fi series. He's met The Doctor -Jodie Whittaker. She invited him into the tardis. 

Now Noah is writing scripts for fan audio versions of the time lord's adventures.

Medical matters and exams are just things he has to put up with in between.

Time is important to Noah - he doesn't know how much of it he has left. "Always stay positive" is his motto. 

Noah was born with a genetic condition known as neurofibromatosis. It means he has regular scans on his body. During a routine scan last year, doctors found something.

"It was so quick," says his mum Shelley, "the doctor said we've had the scans back, and you've got an inoperable brain tumour."

"I couldn't process it; I couldn't speak. Noah, on the other hand, looked for a bit and asked the doctor - 'what do we do?'"

He was told his options were limited to chemotherapy.

"Then he said, 'I'll ask you the real question. 'Is it going to kill me?"

The doctor, taken aback by this direct response from a then 15-year-old boy, told him that it was most probable.

Statistics around brain tumours are shocking.

They are the biggest cancer killer of children and adults under 40. Thirty three people every day are diagnosed with one yet research funding into them is low. According to the Brain Tumour Charity, of the £700m spent in the UK every year, yet less than 3% is spent on brain tumours.

"There are days when I wake up and think, 'why me? What have I done to deserve this?'" says Noah. "But I know it's nobody's fault, and it's just not something that was planned."

His resilience is remarkable.

Since he was eight years old, he's been raising money for good causes - £20,000 so far. This week charities received a shipment of 1300 easter eggs from Noah to give to children. He's collected and given away 6 thousand eggs over the years.

Now he's running a raffle competition to raise money for children's cancer charities, and he has plans to build a retreat for families like his to visit, have fun, and make memories.

He does all this while having chemotherapy. 

Noah's told his doctors if that stops working, he wants to stop his treatment. His mother tells him they'll have that discussion if they reach that point.

'Most people don't talk to me anymore'

His parents don't treat him with kid gloves. He is a typical teenager, he winds them up, and they wind him up. Their Chepstow home isn't filled with sadness, it's filled with laughter.

And while Noah wants things to be normal, it seems some people his age are struggling to know what to do.

"Most people don't talk to me anymore; they've just ghosted me since they found out. They've stopped speaking to me, stopped replying to my messages, stopped calling.

"I think they should just speak to me normally like they used to. Just because I'm balding and in a wheelchair now doesn't mean I'm not a normal person."

Those people are missing out. Noah is a remarkable character. Funny, intelligent and life-enhancing.

At the moment, his tumour is low grade. Let's hope it stays like that.

In the meantime, Noah's got some exams to prepare for and some Dr Who scripts that need typing.