NEWS… BUT NOT AS YOU KNOW IT
The noise in an A&E ward can be relentless – shouts, beeps and whirs of machinery, fused with occasional cries.
So it was hard to focus clearly on what the paediatrician said when she confirmed our fears.
It only really sank in when we overheard her phone call to the children’s ward shortly after, asking for a ‘bed for a newly-diagnosed diabetic’.
Our 10-year-old son Henry – lying in a pastel-coloured cubicle – had a blood sugar level of 29.3 millimoles per litre (mmol/L). A normal child would usually have a level between about four and seven.
Further tests would confirm he had type 1 diabetes (T1D), a serious, lifelong condition that causes the level of glucose (sugar) in the blood to become too high.
That was June 2020. The country was in the throes of Covid-19, and an already surreal year had just taken an even more discombobulating turn.
The first signs that something wasn’t right with Henry were subtle – to the untrained eye, at least. The symptomatic equivalent of a nod or a raised eyebrow.
My wife Rachel and I suspected Henry had contracted Covid-19 in March 2020. In the weeks after, the small changes began.
Henry seemed very thirsty. It was an uncommonly hot spring and he was (and is) very active, but his thirst rarely seemed satisfied.
This drinking, in a way, obscured the second symptom: Henry needed the toilet a lot – and at all hours. As time went on, these visits became more unusual – often riotously heavy bouts of weeing during the night. From a half-awake young boy with an imprecise eye. Messy.
Around the time Henry was diagnosed, he also complained of feeling tired and constantly hungry. We only really recognised this and the final symptom – that he had lost weight – after the event.
Things came to a head one Friday morning in June. Rachel and I were working from home and Henry and his little sister Rosie – who was eight at the time – were doing virtual lessons. Henry had been going to the toilet all through the night that week and Rachel – who works for the NHS – knew something was wrong.
She had bought self-test urine sticks for Henry to use. She came into the room, ashen faced with the results. Henry’s urine had unusually high glucose levels, which she knew was a sign of undiagnosed diabetes.
She called a doctor and we had to get to A&E urgently. T1D can be life-threatening if untreated.
After the diagnosis was confirmed, our senses felt both dulled and heightened. The abstract patterns on the partition curtains swirled, like psychedelia. Sounds melded together into an aural stew, then suddenly became clear again.
Standing outside the entrance on the phone to my parents, I couldn’t believe how oblivious the rest of the world seemed. Didn’t they understand how seismic a day this was – these people smoking, laughing or just getting on with their lives?
Henry had to stay in hospital for a week for tests and while we were taught how to manage the condition. He initially had to be woken every few hours overnight to be pricked and jabbed. We learned how to inject insulin, test his blood sugars, count carbohydrates in every type of food, spot hypos – when blood sugar levels drop dangerously low – and generally muddle our way through parenting a diabetic child.
Henry was brilliant throughout. I recall him being upset just once – shortly after he was diagnosed. He had been plucked from a virtual maths lesson and rushed to the emergency ward and told his life would never be the same, with multiple injections, every day, forever.
After that, though, something clicked inside him and his resolve strengthened. While in hospital, he built Lego spaceships, continued his Zoom lessons and even made a PowerPoint presentation about T1D.
He received a teddy – as part of a pack provided by the Juvenile Diabetes Research Foundation (JDRF) – that showed the best places on the body for injections.
It was an emotional and deeply confusing time. Rosie (who has been fantastic throughout) had to stay with friends and relatives, while me and Rach took turns staying in Henry’s hospital room overnight. My lanky legs were always sticking out the end of the little camp bed with kids’ bed sheets that we slept on.
I remember one night when I was ‘off duty’ – at home alone – sitting in our back garden in the pitch-black night, listening to Nightswimming by REM on repeat (I’m not even a fan), quietly sobbing whenever the plaintive oboe came, desperately craving a cigarette (I don’t smoke) and wishing the past few days had been a bad dream (they hadn’t, of course).
After Henry left hospital, the reality of the constant injections, complicated carb counting, painful blood testing, and endless worrying really hit us. As did the realisation that he would have to manage the condition every day of his life.
There are no holidays from T1D for those with the condition. It is relentless. There were times we felt we were clinging on with our fingernails.
In August that year, Henry joined a clinical trial at Sheffield Children’s Hospital and we think the drug had a dramatic effect in keeping his blood sugar levels lower ever since. It gave us hope that progress is continuing – as did the recent news about what has been called an ‘artificial pancreas’ – and we still regularly see the Sheffield team.
Life now is challenging but fulfilling. Henry is 12 and has been incredible over the past couple of years – stoic, philosophical and strong.
He plays football and cricket for local teams and is aiming for his karate black belt this year. He is doing well at school, has great friends and is an all-round dude already. He doesn’t let type 1 diabetes define him or stop him doing things he loves.
But we have to be meticulous about what he eats and when, wake him in the night if he has a hypo, make sure he has his injections every day and are glued to his ‘constant glucose monitor’ results at all hours. We know there is currently no cure for his condition. But we have decided to do a couple of things to support the T1D community.
The first is to support research to try to find a cure.
So, from 23 January, I’ll be running the length of the M1 to raise funds for JDRF – a fantastic charity committed to eradicating type 1 diabetes.
My route is approximately 220 miles from Leeds to London and will take two weeks (10 days of roughly 22 miles each day) along roads, trails and towpaths very broadly following the route of the motorway. I have called the project ‘M1 for T1’.
It will be tough (I’ve never even run a marathon!), but nothing compared to what those with T1D have to face up to. And I hope that thinking of Henry will keep me on track when the rain is falling and my legs are failing.
I am no ‘ultra’ runner, but I have been training hard – increasing both the frequency and distance of my runs – and now feel ready (with a fair dose of trepidation) to give this my best shot.
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The second is to raise awareness – to give people an understanding of T1D that I didn’t have and an ability to spot the signs that I missed.
The smart folk in diabetes research have come up with a simple way to remember the symptoms, called the 4 Ts: going to the Toilet a lot; being really Thirsty; feeling more Tired than usual; looking Thinner. As with any symptoms, you should always call your doctor if you have concerns.
By raising money and awareness, I hope we can support kids like Henry – the T1D ‘warriors’ who face down a relentless opponent every day – and ultimately help end type 1 diabetes.
You can sponsor Jamie on his JustGiving page and follow his progress on Twitter.
Do you have a story you’d like to share? Get in touch by emailing James.Besanvalle@metro.co.uk.
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