From the outside, David Aitken never appeared to be ill from his diabetes.
Even when he was diagnosed - aged just 12 - his only symptom was thirst. But three weeks short of his 20th birthday, a complication of the condition suddenly claimed his life.
For his parents Zoe and Gary, who were travelling home from a holiday in March last year when they learned of David's death, the news was unfathomable. The day before, David had spoken on the phone about a possible stomach bug but reassured his parents that his blood sugar levels had been "fine all day", Wales Online reports.
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What they did not know was that it had been some time since David's levels were fine. Although thriving at the University of South Wales and loving student life in Cardiff, David had recorded an extremely high blood sugar level in early January. Zoe and Gary say they had not been told.
The couple, from Whitland in Carmarthenshire, do not blame the NHS for their son's death but they believe stretched resources may have led to missed opportunities to save him. Hywel Dda health board has promised a "thorough clinical review" of their concerns. Zoe, 59, told WalesOnline: "David was kind and funny, and he would have been just such a lovely man if he got that far. We feel it's such a waste. It needn't have happened."
Although David was only 20 seconds younger than his twin sister Sian, she always assumed the "big sister" role, said Zoe, who is raising funds for Diabetes UK in David's memory. Sian has always been well-organised, while David was more "whimsical". Gary, 63, recalls an occasion when David remarked solemnly aged five: "I wish I was four again, I liked being little." Another time, while playing in the garden at the age of six, David said to Sian: "I've had a fun life."
David perfected a facial expression that suggested he was listening intently when he was actually day-dreaming. In a year one assembly at school, he was meant to stand up after winning a 'listener of the week' award, but missed his name being called because he wasn't listening.
He loved watching TV, especially Dr Who. Gary remembers taking a picture of his son dressed as David Tennant's Doctor, waving a sonic screwdriver above his gelled-up hair, alongside Sian who was in the role of Kylie Minogue's character from a Christmas special. Six-year-old David was thrilled when the photo appeared in a Dr Who magazine.
David was very shy but Zoe was struck by how he seemed to overcome this when he was passionate about something. One example was when she took him to see stars from Strictly Come Dancing, one of his favourite programmes, at a live show in Swansea. Afterwards David told Zoe he was going to brave the rain and wait by the stage door in the hope of speaking to Aljaz Skorjanec, one of his favourite dancers. "When Aljaz came out for a cigarette, David approached him and they had a chat," said Zoe. "It was so out of character, I was flabbergasted."
The twins spent their early years in Coventry before Zoe, who was an accountant, and Gary, an IT specialist, moved the family to Carmarthenshire when they were eight. David enjoyed life in Wales, joining the scouts and going for swims at Pendine Sands. He also loved attending Dr Who conventions in Cardiff, where he collected autographs from many former Doctors. "You'd have to wait for ages because he eked out every last minute," laughed Zoe.
Sian, a 21-year-old student at Cambridge University, said her brother gave up battling her for the front seat of the car when they were about 11. "I used to like to think it was because he knew his place," she said. "My brother always used to let me be player one on the Wii; I used to think it was because he knew I was faster on Mario Kart. My brother always used to let me do the talking; I used to think it was because he was shy. I realise now, ten years since he stopped racing me to the front of the car, that my brother was just an amazingly nice, caring twin brother.
"I have always respected my brother’s attitude towards life, the way he always did what he wanted to do despite what others, or society, would tell him. He had a passion for things that most teenage boys wouldn’t — watching every single episode of Glee and memorising every single Strictly dance and song ever, to name just a few. He remained passionate about it despite my usually quite obvious eye-rolls, and I will always admire and cherish this about him, remembering that life really is too short to give a damn, that we should stress less and stay in bed more."
When David was nearly 13, his parents noticed he was drinking "incredible" amounts of water and squash. His extreme thirst was the only symptom for what was diagnosed as Type 1 diabetes, a disorder in which the pancreas fails to produce enough insulin. What causes the condition is unclear, but unlike with Type 2, diet and lifestyle are not triggers.
David spent a couple of days at Glangwili Hospital where medics told him he was not going to "feel ill anymore". But Zoe said: "The strange thing was he had never felt ill from it, which was quite unusual. All he ever had was a feeling of thirst. Leaving the hospital, he asked me, 'Have I got diabetes for the rest of my life?' And I said, 'Unless they find a cure, Dave.'"
The diagnosis did not faze David. He got used to pricking his finger and using a glucose meter to measure his level before a meal. He would then work out how many gram of carbohydrates he was going to eat, so he knew how many units of insulin to inject. David was still able to indulge his sweet tooth as long as he took the right amount of insulin, and he never complained to his parents about his routine.
Although Zoe and Gary supported him, they knew he would need to manage the condition for himself. "We were careful not to take control of it for him," said Zoe. "This worked well until he became an older teenager when, not surprisingly, he wanted to involve us as little as possible. As David approached adulthood, he tended to take his blood and inject himself in his bedroom, informing us what his readings were."
Every six months David took detailed blood tests which, until the final months of his life, always gave a reading within the acceptable range. At 18, he left the family home to study photojournalism at the University of South Wales, before switching to media, culture, and journalism. He enjoyed the course and had mentioned to his parents he would like to become a film director.
"Living in the middle of Cardiff as opposed to rural west Wales gave David far more opportunity to eat takeaways and junk food, which he loved, but this would have been acceptable if he'd been giving himself appropriate amounts of insulin," said Zoe. "It was noticeable that he was more reluctant to discuss his diabetes with us or to tell us what his blood readings had been. We thought this was acceptable for a young adult.
"Lots of people with Type 1 diabetes are in and out of hospital with it, even as teenagers, and he never had anything like that. We think it had given him a false sense of security. David said to me on a number of occasions, 'It's not even that bad mum.' We tried to make him aware of the potential dangers of the condition but what young adult doesn't think they're invincible?"
In March 2022 Zoe and Gary travelled to Suffolk for a short holiday. David had seemed in good form when he called them on March 12 for advice on buying a suit for an event. The couple set off on the morning of March 14 and as they arrived in Suffolk eight hours later, received a text from David saying he was feeling unwell.
"We phoned him and it sounded like he had some sort of stomach bug," said Zoe. "Crucially he told us that his blood had been 'fine all day'. We advised him to keep his fluid intake up and to keep an eye on his blood and arranged that he would phone us in the morning. That was the last time we spoke to him.
"In the morning we couldn't get hold of David. We didn't worry too much at first as he was classically bad at answering his phone or even at having notifications turned on. We became increasingly worried and contacted his letting agency who phoned one of his flatmates."
David's flatmates in Roath had known he was feeling unwell the night before. Seeing his door closed when they went out on university placements the next morning, they assumed he was still asleep. Later that day, David was found dead in his room.
Zoe said: "We started driving back because we realised the letting agency was not telling us something. It was beyond your worst nightmares. We were on the M25 at rush hour and we knew police were involved. One of Sian's friends had gone to where he lived and found police there. Through that friend, we were eventually able to contact police.
"The sergeant said, 'You need to get to Cardiff now.' I said, 'He's dead, isn't he?' And she said, 'If you've worked that out, I'm not going to contradict you.' I still have that vision of being at South Mimms service station when we found out. I will never forget it."
Months later a pathologist gave the cause of death as diabetic ketoacidosis, which happens when the body is running out of insulin. David had a glucose concentration of 42.6mmol/L. The normal range for a healthy person is 4-7mmol/L.
Zoe said: "David had routine blood tests in early January 2022. These showed what we would have deemed to be an alarmingly high blood glucose level on that day (37.7mmol/L). David's diabetes team contacted him about this, but we were never made aware of it."
After David's death, the family learned his glucose meter had no readings on it from after January. "This suggests that at best he was attempting to short-cut the system by making assumptions about his insulin needs and injecting himself accordingly," said Zoe. "We have no way of knowing how much insulin he was giving himself, but it can't have been enough… Our only guess is that he was thinking he'd got the system cracked."
Until that January, David's test results had always been posted to the family home. Although he was an adult, his parents say there were permissions on his file for them to be contacted. They believe a "red flag" should have been raised by Glangwili Hospital after the high reading.
It was not the only thing that left them thinking: "What if?" The family say David had phone appointments about his diabetes but had not seen a consultant face-to-face since February 2020. The Covid pandemic had caused appointments to be cancelled, and one was postponed the month before he died, with David due to attend the rescheduled appointment within a few weeks, they added. "If one thing had changed, he would probably still be here," said Gary. "Even down to nobody being around that day because his flatmates were on a placement, every roll of the dice went wrong."
Zoe added: "We are very aware of the pressures on the NHS. Covid rode a coach and horses through a service that was already struggling."
The family believe David may have been experiencing 'diabetes distress', a feeling of being overwhelmed by the condition. "It's so difficult to know when someone's struggling," said Zoe. "Sometimes it becomes too much to handle and people stop doing [a full routine of measurements and insulin]."
The parents say the loss of their son is "there all the time". But Zoe added: "We have got our daughter and Gary has got an older son, Tom. We are such a close family. We talk about David, and the funny things he did and said. It's amazing how many of his friends have said how kind and funny he was."
Sian said: "I can’t say that I think it was David’s time to go, because it wasn’t, but I said to my parents not long after losing Dave, that he probably wouldn’t have enjoyed adulthood anyway, like a little Peter Pan that was destined to a chilled-out life of childhood. I perhaps don’t necessarily still think this, because of course he would have thrived in the David way that he always did. Dave was becoming an intelligent, charismatic, funny young adult.
"I won't get to grow up beside him anymore but I can smile at the thought of what his family home would have looked like in the future, decorated in vast Doctor Who memorabilia. I can smile at his perseverance in not giving a s*** and not listening to what anyone thought about anything — including, much to their great annoyance, our parents."
Sian has happy memories of dancing with David to the Queen song Don't Stop Me Now during childhood holidays. "I had to go to my twin brother’s funeral and listen to this song play, and as much as it saddens me to listen to this song now, it really does sum up Dave’s life," she said. "So I think that everyone should scream: 'Don’t stop me now, because we are having such a good time' and remember the fun-loving, bright and happy person my twin brother was."
Mandy Rayani, director of nursing and patient experience at Hywel Dda health board, which runs Glangwili Hospital, said: “Firstly, I would like to express our sympathies to Mr Aitken’s family for their loss. While we are unable to comment on individual cases, I can confirm the health board is in contact with the family regarding their concerns and is committed to a thorough clinical review of the issues they have asked us to consider.”
Earlier this month the Diabetes UK charity reported that delayed health checks among people with diabetes may have contributed more deaths than usual last year. A figure was not given for Wales, but there were more than 7,000 excess deaths in England linked to the condition in 2022, which is 13% higher than pre-pandemic levels.
David's family have started a fundraiser to help Diabetes UK push for better support for young adults with Type 1 diabetes. You can donate here.
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