Charlie Lock, a 19-year-old from Merthyr Tydfil, was told he had roughly two weeks to live after being discharged from hospital, yet five months on he continues to set himself new goals despite living with an aggressive, terminal brain cancer.
He has endured a medically-induced coma following severe seizures and has been working to regain movement in his body, all while achieving what he calls several "dying wishes." In that time he has married his long-term girlfriend, Judy, travelled to Norway, and fulfilled a long-held ambition to speak with Sir Tim Berners-Lee about the invention of the World Wide Web.
His next ambition is a personal one: he wants to be waiting to catch Judy in his arms when she lands after completing a skydive.
"I was upset that I'd broken my promise to Judy that I'd be with her forever," he said.
"I intend to spend every second I have left sucking air with her and my family."
How did Charlie's diagnosis unfold?
Before his illness, Charlie was in his first year studying cyber security at the University of Gloucester, having earned four A-levels and a scholarship. Living independently with Judy, who has autism, was itself a significant achievement for him.
"The only thing I was worried about was what was in the fridge," he said.
That normal student life changed abruptly when he began experiencing headaches and sickness. His mother, Cerys Lock, recalled that Charlie described a sense of "impending doom" he could not put into words. In November, he collapsed and was rushed to hospital.
Scans identified a tumour that was later diagnosed as a grade four glioblastoma — a fast-growing and aggressive form of brain cancer that his family says doctors seldom see in patients his age. According to a regional news outlet, scans had shown a large malignant tumour accompanied by bleeding and swelling on the brain, and medical staff treated it as grade four due to how aggressively it regrew after surgery.
"The person who did the scan looked at the sheet and went white as a sheet," Charlie recalled. "The look she gave me was one of pure terror. It's like she'd seen a ghost."
"That day was devastating," Cerys said. "Absolutely devastating."
What treatment has Charlie received?
Charlie underwent surgery, radiotherapy and chemotherapy, but his condition continued to deteriorate. Because doctors could not conclusively classify the type of tumour, a sample of it was sent first to London and subsequently to a specialist brain centre in Michigan for further analysis, according to the same report. The same report notes he was later offered a place on a new UK clinical trial for aggressive brain tumours, becoming only the second person in the country to take part.
On 13 February, Charlie suffered around ten seizures and was rushed back into hospital, where doctors placed him into a medically-induced coma.
"The consultant's words were 'there is no way he can wake up from this'," Cerys said.
How did Charlie propose to Judy?
Contrary to the grim prognosis, Charlie woke within hours and immediately tried to get out of bed. Cerys recalled the moment with laughter.
"The doctor pulled back the curtain and he's sat there with a Big Mac in his hand," she said. "He said 'in all my years working in ITU, I've never seen a patient sat there eating a full-on McDonald's'."
"He's got a very wicked humour," she added. "He has the nurses and carers in stitches most days. If we're not laughing, we're crying."
Even during one of the bleakest periods of his life, Charlie was clear about what he wanted next.
"Love at first sight. I knew I wanted to marry her from the day I met her," he said of Judy, his girlfriend of three years.
Cerys said the couple have always been extremely close.
"They've always been like that," she said.
"We kiss quite a lot," Charlie added.
Shortly after waking from the coma, Charlie proposed.
"Even if it's the last thing I do, I want to marry you," he told Judy.
What happened on their wedding day?
Just two weeks later, on 16 March, the couple married at Llechwin Hall in Pontypridd, Rhondda Cynon Taf.
"There have been many times where doctors have told me I was dead meat — not in those words — but I've been told several times that I was going to die very soon," Charlie said. "I never imagined I'd have to face that this early. I wish I'd discovered it after I'd had a chance to live a life."
He added, with characteristic humour:
"I've left some sperm samples for Judy when I'm gone so I can leave her little annoyances."
"Starting a family was something we'd always wanted," Judy added.
Around the same time, Charlie developed an infection that turned out to be meningitis. Although doctors wanted to keep him in hospital, they made an exception so he could attend his own wedding.
"They said he only had two to three days. He was so poorly," Cerys said.
Against expectations, his condition began to improve once he returned home.
"He started getting stronger and stronger," Cerys said.
What gaps has the family found in his care?
Months after being told he had days left, Charlie is still here — but his family says his age has left him caught between different tiers of the health service. They describe the nurses and carers who have supported him as "wonderful," but say Charlie has fallen between children's, adult and palliative care pathways, making it difficult to access equipment and rehabilitation support.
"He's 19. He doesn't want to be laying in bed," Cerys said.
"He didn't fit into Noah's Ark Hospital, because he was 18, we had to come under Velindre as an adult," she said. "As lovely as staff are, the place isn't adolescent-friendly at all. It was really upsetting for Charlie and Judy."
"They sent us home expecting Charl not to be here, but he is here, and it feels like he doesn't fit any particular pathway."
A spokesperson for Velindre University NHS Trust said the service works closely with partners to provide coordinated, person-centred support and is committed to continually improving the experience of patients and families. Jason Roberts, Executive Director of Nursing at Cardiff and Vale University Health Board, said the board is committed to providing safe, compassionate and high-quality care and takes any concerns raised about its services seriously. A spokesperson for Cwm Taf Morgannwg University Health Board said its specialist palliative care services include physiotherapy, occupational therapy and support for young people transitioning from children's to adult services, with care assessed and tailored to each patient's individual clinical needs.
What has Charlie achieved since coming home?
Since returning from hospital, Charlie has married Judy, flown in a helicopter in Norway, and begun regaining movement in his left hand. According to a national broadcaster's report, he had been due to meet Sir Tim Berners-Lee in person to question him about creating the internet, but was too unwell to travel and instead spoke with him over a video call.
"A few people have said what I've done is not possible or responsible," Charlie said.
What happens next?
According to the same broadcaster's report, Charlie's immediate priorities are to continue his rehabilitation and to be present when Judy completes a charity skydive. The challenge carries particular meaning for him, since he completed his own skydive in Swansea on his 18th birthday and still counts it among the best experiences of his life.
"I'll be there when you land and you can land in my arms," he told his wife.
