'An angel on earth' Normanton mum who lost son to brain tumour shares his story

Claire Morrison from Normanton is supporting Yorkshire’s Brain Tumour Charity’s Childhood Cancer Awareness Month campaign by sharing her son, Matty’s, story for the first time.

Matty died on May 8 this year, almost two years since a skateboarding accident led to the discovery of a brain tumour.

On July 18, 2020, Matty suffered a seizure after falling from his skateboard while out with friends.

He was taken to A&E for a CT scan and, after being kept in hospital for a further MRI scan, Matty was told a tumour had been found on his brain.

Claire said: “He’d never had any symptoms at all before that.

“I was so confused, thinking how do you get a brain tumour from falling off a skateboard?”

After more tests to check the cancer hadn’t spread from elsewhere in his body, Matty had surgery, which removed 99% of the tumour which, the family was told, was a grade 2 slow-growing oligodendroglioma.

Claire said: “Matty had a very slow and painful recovery and he was annoyed because he was told he’d be able to come home in four days, but he actually came out on September 11, so he spent his 20th birthday in hospital.

“He really changed as a person, he was very short tempered, which wasn’t like Matty at all.”

Matty had to take a year out from his Electronic Music Production course at Leeds University for his recovery.

Around May 2021, they found out Matty had had a regrowth – the tumour was now a grade 2 astrocytoma. He refused surgery because his previous recovery had been so long and painful.

On July 26, just before starting radiotherapy, the family found out the results of another scan, which revealed the tumour was now a grade 4, fast-growing glioma, one of the most aggressive forms of tumour.

Matty was told he had 18 months to five years to live.

“I lost it,” Claire said. “But Matty said ‘Mum, stop crying. I decide – they don’t know for sure.’”

He started radiotherapy and didn’t have any effects apart from hair loss, and Claire promised to shave her hair at the same time as Matty.

“We were both very defined by our hair. To begin with, Matty said ‘Mum don’t be daft’ but once we’d done it he said ‘that was sick’, he thought it was hilarious.”

“Friends and family members organised a Brave the Shave event to raise funds, and the whole community got together to support it.”

Matty finished radiotherapy on September 6 2021 – his 21st birthday. He went back to uni and started skateboarding again. Nothing was holding him back.

But in October, Claire noticed a swelling between Matty’s eyes. More tests revealed a bleed on his brain. He was put on steroids and extra anti-seizure medication.

That evening, Matty got home and had a tonic-clonic seizure, and had a further seizure once he arrived at hospital. He was kept in hospital for a while, then began to recover.

Claire said: “We’d been told the radiotherapy wouldn’t shrink the tumour and would just keep it stable, but on January 13 this year, we received the best news – the tumour had shrunk by almost half.”

By the start of February 2022, Matty was having a seizure every two weeks and was diagnosed with epilepsy.

“The epileptic fits were horrendous,” Claire said.

"Matty had to drop out of uni, because he was so scared he’d have a seizure in his room and no one would be able to get in to help him. He was gutted.

“We were too afraid to let him go anywhere by himself. We had a motion sensor camera in his room to alert me if he had a seizure. I hardly slept for months.

“But Yorkshire’s Brain Tumour Charity gave him the funds to buy a seizure alert bracelet and he started to get a bit of independence. I know how much comfort it brought me and Matty.”

At first, he couldn’t tell he was about to have a seizure, but he soon began to sense them coming, and eventually could feel the start of the seizure and said it was very painful.

“To know he was going through pain was heartbreaking.”

A few weeks later, Matty’s left foot started to drag when he was walking, and he got pins and needles in his left hand, so he returned to hospital.

He started taking sodium valproate, which stopped the seizures, but the left-hand side of his body deteriorated further and he would shake while eating, using his phone or walking.

On March 25, the family received a call from the surgeon, who said significant regrowth and three cysts had been found in Matty’s brain. He refused surgery.

Claire asked whether Matty’s prognosis had changed, and the surgeon explained he had just four to six months left.

“From that day Matty went rapidly downhill. He couldn’t wash or stand, he couldn’t feed himself, he couldn’t control anything,” Claire said.

“He wasn’t really the same Matty anymore. He’d sit in a daze, he’d get irritated very easily.

One night, Claire caught Matty on his stairlift trying to sneak downstairs for an extra slice of cake – the steroids he was on made him crave sugar. Once Claire had brought him some cake, Matty told her what he wanted at his wake – a music festival theme and a “good buffet” with all his favourite foods.

“He refused to go to a hospital or hospice, and I agreed. I cared for him to the end.

“Everyone was amazing – the palliative care team, the district nurses, Macmillan. The help we got was phenomenal.

“We thought we had a lot longer with Matty, but he only lasted seven weeks and two days after his prognosis.

“He hated being looked after, he was so embarrassed. He was always concerned about how everyone else felt, rather than himself.

"On the day he died, a nurse gave him a painkiller injection. She was shocked because he said ‘thank you’. You don’t usually get that when people are in pain. I said ‘that’s just how he is.’

“Matty went into a seizure. The nurse said ‘Matty is dying. This could take about three days.’

"His breathing changed and I said ‘I don’t think it’s going to be three days.’ Matty had previously said ‘If I can’t take my medication myself or feed myself, I don’t want it.’

"I said to the nurse, ‘he couldn’t control any of this, but he’s controlling it now.’ Matty passed away at 4.38pm that afternoon in my arms.”

On his birthday this year, September 6, Matty’s ashes were sent into space.

“Matty always talked about how amazing it would be to go to space, so that was our way of making it happen.

“Matty’s dream was to DJ and travel the world and eventually become a Doctor of Music. We made his funeral more like a gig, and my partner stickered up his coffin with his DJ persona, Nyhavo.

“Eventually, I want to set up a fund, so underprivileged kids can use his decks and equipment, to give them a chance to perform.

“Everyone’s kids are special, but I really feel like he was an angel on Earth.

"Since he’s been gone, I’ve had strangers message me saying that Matty was there for them at a really hard time, that he basically saved their life.

“You don’t think about brain tumours until your family’s hit with one, but they’re actually so common and kill so many young people. We saw children in hospital with tubes coming out of their heads, babies in pushchairs.

"One of Matty’s friends on his uni course had one too. You think ‘What’s causing this? Why is this still happening?’

“There needs to be more research. They’ve been doing the same treatments for over 30 years and nothing’s changed.”

Yorkshire’s Brain Tumour Charity funds research to find better treatments and a cure for brain tumours, as well as providing support for children, young people and adults impacted by a diagnosis."

To find out more go to yorksbtc.org.uk/support To make a donation of £1, text CCAM to 70460.