When 14-year-old Rhyan Worthington collapsed at school, his family feared the worst
Rhyan Worthington from Ilfracombe
A North Devon family with an inherited condition which puts them at high risk of developing cancer have been left heartbroken after their 14 year-old son was diagnosed with a brain tumour.
Rhyan Worthington collapsed at school with a seizure last month just before his fourteenth birthday. Days later he was in hospital awaiting brain surgery.
Rhyan’s uncle, Cody Worthington, a registered paramedic, said: “Rhyan was in A&E in Barnstaple, and he was deteriorating fast – seizures, pain, neurological problems. Within two days, scans confirmed he had a sizeable brain tumour. He was blue-lighted to Bristol Children’s Hospital. It was absolutely devastating.”
The Worthington family live with an inherited genetic condition called Lynch Syndrome that’s haunted them for generations. The syndrome is a hereditary disorder that dramatically increases the risk of developing various cancers which tend to show up in middle age.
Rhyan Worthington from Ilfracombe
Cody said: “We have a particularly aggressive mutation, HMLH1. We were diagnosed back in 2007 after my sister Lauren died from cancer at just 18. Since then, 10 of us across two generations have tested positive. Only three haven’t developed cancer yet.”
“It’s had a massive impact on our mental health. Every one of us is just waiting. We absolutely expect cancer to hit. It’s become normal in our family. Honestly, I feel like we’re being killed off one by one.”
“If Rhyan’s tumour is cancerous and related to Lynch, he’ll be the youngest in the family so far to be diagnosed. He’s already the youngest to show such serious symptoms.”
Rhyan’s parents, Ricky and Holly, are separated but co-parent their children in Ilfracombe. With Ricky aged 41 and Holly 40, both currently unable to work during this crisis. They split their time between hospital visits in Bristol and caring for their other three sons at home.
“They’re exhausted,” Cody admits. “One has to be in Bristol with Rhyan, the other in Ilfracombe with the boys. They’ve no charity accommodation, so they travel back most nights. No public transport can really support the journey. Their cars were both broken when this started. I’ve been doing most of the driving and support work.”
“Honestly, without help, we’d not be able to keep going more than a week or two,” says Cody. “Fuel alone is burning through what little we have. There’s also food, parking, accommodation, and provisions for Rhyan. His parents tried to give me their last pounds just to help with the driving. I couldn’t take it but I’ve not got much either.”
Rhyan Worthington from Ilfracombe
Reluctantly, Cody set up a GoFundMe fundraiser to help improve the financial situation.
“We’re a proud family. We don’t ask for help, especially not money. But we knew we had no choice. If this is a months or years-long journey, we need support.”
The response has been overwhelming. “We’ve been astounded,” he says. “People we don’t even know have donated. The support has taken a huge weight off. It means we can focus on Rhyan, not survival.”
Cody says Rhyan’s coping “surprisingly well”.
“He’s a quiet lad, enjoys gaming, comics, DC and Marvel. He’s private, a bit stoic even. He just wants to be back home and back to normal. Given what he’s going through, he’s been an absolute trooper – still light-hearted at times, still managing to make us laugh.”
Despite the dire circumstances, the Worthingtons are a tight-knit, quietly resilient family. “We’ve had phenomenal support,” says Cody. “People offering lifts, fixing cars, donating. Just being there. I suppose we’ve learned to survive by holding each other up.”
“We just hope it’s an isolated tumour and that recovery is possible.”
Rhyan Worthington from Ilfracombe
The family are also highlighting the need for better screening and are raising awareness about the condition to help others.
Cody said: “We’re only screened for bowel cancer with colonoscopies and oesophageal cancer with gastroscopies. But we’ve had cancers all over the body.
“The NHS won’t test or screen children for Lynch until they’re 18. Screening doesn’t even start until 25. That leaves a generation of at-risk, kids like Rhyan, in limbo.
“We’ve known about our risks for nearly two decades, and we’ve been begging for broader screening and earlier intervention ever since.”
Now, as Rhyan lies in a hospital bed in Bristol, awaiting urgent brain surgery, that plea has taken on new urgency.
The family’s genetic team is also investigating the possibility that their strain of Lynch may be even more dangerous than previously thought.
“There’s suspicion we may have CMMRD,” Cody says. This is a rare and severe condition where children inherit mutated genes from both parents, leading to extremely high cancer risks early in life.
“But we’ve heard nothing since that initial suspicion. It hasn’t changed our testing or screening protocols. We’re still in the dark.”
Rhyan Worthington from Ilfracombe
Cody was Rhyan’s age when he lost his sister Lauren. “I know how it affected me then and how it’s stayed with me all my life,” he says.
Cody is now focused not just on Rhyan’s battle, but on raising the need for early testing, broader screening, more informed healthcare professionals.
“Too many doctors don’t know what Lynch Syndrome even is,” he says. “They think it just causes bowel cancer in people over 40. But the more serious mutations, like ours, lead to childhood cancers. Doctors need to know that. Parents need to know that.”
His message to others is blunt but vital: “Get screened. Make sure your GP understands the risks. Push for your kids to be tested. Don’t let the system ignore the early signs. Lynch Syndrome is deadly, and it doesn’t wait for you to hit 40.
“I hope Rhyan can go back to being a teenager. That we get the help we need to keep him surrounded by his family. And maybe one day, families like ours won’t have to beg to be taken seriously.”
A GoFundMe page has been launched to help the family at this time.