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A 19-year-old has died from a rare and aggressive brain tumour just months after his symptoms were initially misdiagnosed as an ear infection.
Jac Sexton had just begun his career as a barber when he began experiencing dizziness and slurring his speech in October 2024.
His symptoms were initially misdiagnosed but were soon found to be the result of a high-grade glioblastoma.
The tumour was found on the brain stem which is highly rare and meant they were not able to perform a biopsy or treat it as a regular cancer.
After an intense six-week course of radiotherapy, Jac lost the ability to swallow and shortly after suffered a sudden and near-fatal medical collapse which required emergency surgery at his home in January.
Doctors were initially stunned as Jac staged a remarkable recovery they “had not seen in 30 years” of medicine, but his brain tumour remained and claimed his life on February 25.
The cause of death was a diffused glioblastoma.
Jac died in his mother’s living room in Aberdare, surrounded by close friends and family.
Jac’s uncle Rhydian Sexton, 37, a site supervisor from Aberdare, who has been “like a father” to Jac, said he “touched so many people in the last few months.
“The nurses called him ‘Sassy Jac’. Even though he was going through what he was, he had so much character.
“That’s what kept him fighting so long. In the last two weeks, the laughter we’ve had in the house was amazing. The relationship he had with his family said it all. He was happy, which is the main thing.”
Jac was just beginning a career as a barber – a lifelong passion of his – working in a friend’s shop, building his own clients and steadily improving his skills when he first started experiencing symptoms.
The following day Jac went to the doctor where he was told he had an ear infection, thought to be a side effect of the glandular fever he had suffered over the previous summer.
Returning the next day, however, a second doctor referred him for a CT scan two weeks from then, but his symptoms continued to worsen.
The day after the referral, Jac’s mother took him to Prince Charles Hospital A&E in Merthyr Tydfil – by 9.30pm that night on October 17, he discovered he had a brain tumour.
Owing to the size of the cancer and the location on the brain stem, which prevented normal chemotherapy treatment, Jac undertook the most intense course of radiotherapy possible: five days a week for six straight weeks.
“He ploughed through it regardless of how fatigued he was,” Rhydian explained.
The treatment ended on Christmas Eve, but the final session took its toll and Jac lost the ability to swallow or get out of bed, which he never regained.
Days later on January 4, Jac suffered from an aspiration, stopped breathing and collapsed.
An aspiration occurs “when food, drink or saliva goes the wrong way, enters the windpipe and goes into the lungs”, according to the NHS.
When paramedics arrived they cut open his trachea to get to the blockage, and for the next 40 minutes he drifted in and out of consciousness as his access to oxygen waned.
When Jac reached Prince Charles Hospital, doctors said his condition was critical.
They expected that the lack of oxygen would have caused swelling of the brain, a deadly outcome given the size of the tumour.
“The prognosis was bad,” Rhydian said,
“The doctors said that if he did wake up, he would be brain dead or fully disabled.”
Within 24 hours they removed the tubes and discovered to their amazement that Jac had pulled through neither fully disabled, nor brain dead.
“The doctors said they’d never seen anything like this in over 30 years,” Rhydian said.
“The amount of trauma Jac’s body had been through with the tumour and the radiotherapy and now this on top, nobody’s body should be able to go through that.”
Jac was then transferred to Noah’s Arc Cancer Centre, a centre that provides palliative care for children with life-threatening illnesses, at the University Hospital of Wales.
He remained there for five weeks from January until early February this year.
“You see so much negativity around the NHS,” Rhydian said,
“But Noah’s Arc has been amazing – the nurses there are second to none.
“Nothing’s too much trouble. The passion they had for caring for their patients is remarkable.”
Eventually he was able to return home, receiving 24-hour palliative care at his mother’s house in Aberdare and seeing his close friends and family, of which he had many.
“His older brother Jay was by his side,” Rhydian said.
“And his cousins Caitlin and Josh, Libby, Riley and Mason, all came to see him too. His stepdad Rob was also so important and his girlfriend Abby was with him for his final few weeks.”
A friend set up a GoFundMe page when Jac fell ill with a target of £1,000, but it has already surpassed £13,000.
“The aim is now to promote Jac’s story and raise as much as we can,” Rhydian explained.
Despite his own challenges, Jac had hoped to donate some of the proceeds to the Noah’s Arc Cancer Centre – and the family now hope to use the money to support his mother and two-year-old brother.
“Jac wanted to donate part towards his particular cancer. But because of the rarity it’s difficult to know where it goes. We’re waiting on information from his cancer nurse from the Valindra Centre (in Cardiff),” said Rhydian.
Rhydian is also thankful for all the support from the Ronald McDonald Charity who helped Jac’s family with accommodation near the cancer centre, as well as with food and support groups.
“It’s important people realise that every donation you make really does make a difference to people like Jac,” he said.
“You don’t realise it until it happens to you.”
Jac had received overwhelming support from friends and family, and his resilience caught the attention of Welsh rock band Stereophonics, who sent him messages of support and had even promised him tickets to their tour.
Despite losing the power of speech and the function of the left side of his body, Jac continued to fight until the very end and did not lose his sense of humour.
He was given a smart watch for Christmas, and after setting it up from his bed in the living room, which he could not leave, it sent him an automated message saying: “It’s time to move, please stand up.”
Rhydian said Jac laughed at the irony.
“I’d come and see Jac in the mornings,” Rhydian said. “And he’d be laughing. He was as happy as he could be in such a negative situation.”
