When his little boy Sam was given a devastating type 1 diagnosis, the BBC’s JUSTIN WEBB wrote movingly about his fears… now, 10 years on, father and son reveal his story is proof you can have diabetes AND live life to the full
Ten years ago, broadcaster Justin Webb’s son Sam, then eight, was diagnosed with type 1 diabetes. Writing in The Mail on Sunday, Justin revealed his ‘shock and heartbreak’ and fears for the future.
Today, in his own words, Sam, now 18, paints a resoundingly positive picture. And his father admits that he, too, is almost ready to stop worrying…
Ten years ago, broadcaster Justin Webb’s son Sam, then eight, was diagnosed with type 1 diabetes. Writing in The Mail on Sunday, Justin revealed his ‘shock and heartbreak’ and fears for the future. Today, in his own words, Sam, now 18, paints a resoundingly positive picture. And his father admits that he, too, is almost ready to stop worrying…
I was recently flicking through some old photographs and found a picture of my eight-year-old self on a family holiday, standing by a swimming pool, my eyes squinting in the sunlight, chocolate ice cream spilled across my white shirt. I was grinning, unburdened and happy, as a child ought to be.
Just a few weeks later I was diagnosed with type 1 diabetes, and everything changed.
I’d been tired quite a lot. And, embarrassingly, I’d wet the bed a couple of times, which given my age, was a concern. I was constantly thirsty, and hungry.
And so on one sunny day, with Christmas around the corner, I sat waiting to be seen in a doctor’s office.
To persuade me to go without making a fuss, Dad promised me I wouldn’t have to have any injections.
The rest of the day is a bit of a blur – although I do recall quite a few injections, which I wasn’t too happy about.
A doctor said to me: ‘I’m really sorry, but you have type 1 diabetes.’
I didn’t understand what I was being told, but I could see from the worried expressions on my parents’ faces that it was serious.
Without insulin, sugar builds up in the blood and causes damage. So we type 1 diabetics have to inject a synthetic version of the hormone after eating. And then there is the constant finger-pricking to draw the blood needed to test sugar levels
There was a stuffy grey lift which stank of disinfectant, and when the doors closed, the sounds of the hospital – the beeping noises, the crying babies – were gone.
A musical melody played in the background, my parents were squeezing my shoulders, and a nurse was with us. After a while she looked at me and asked: ‘Did you ever want to be a pilot anyway?’
The tension broke. My parents laughed. ‘Not really,’ I told her, blushing slightly, as the doors opened, and the noises recommenced.
Back in my bedroom, I remember thinking it was all over. It wasn’t, of course. Life changed, but it did go on. I slowly discovered more about my condition.
My pancreas had packed up – doctors still don’t know why it happens – and so I no longer produced my own insulin, the hormone that helps the body’s cells use sugar for energy.
Without insulin, sugar builds up in the blood and causes damage. So we type 1 diabetics have to inject a synthetic version of the hormone after eating. And then there is the constant finger-pricking to draw the blood needed to test sugar levels.
It’s a balancing act. You need to take enough insulin to keep blood sugar normal because if it’s high, it starts to cause irreversible damage throughout the body.
But if you inject too much, blood sugar can plummet. This is called hypoglycaemia, or a hypo. You feel very wobbly, and confused, and it can even lead to blackouts.
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This is why type 1 diabetics, it was later explained to me, weren’t allowed a commercial pilot’s licence. It is no longer a disqualifying factor – the law changed in 2012 – but I still don’t want to be a pilot.
Since the age of about nine, I’ve used an insulin pump, which is an electronic gadget that’s permanently attached to me, delivering insulin as and when I need it, so I don’t need to inject myself.
I don’t need to prick my finger all the time either, thanks to my Freestyle Libre, a tiny sensor stuck to my arm which sends my blood sugar levels, wirelessly, to an app on my mobile phone. The Prime Minister, Theresa May, who also has type 1 diabetes, has one too.
Ten years on from my diagnosis, the condition doesn’t stop me from doing anything.
When Mrs May announced she had type 1 diabetes, my dad wrote that she was proof I could grow up to be whatever I wanted to be, even the PM.
And he’s right, but instead I’d quite like to be a writer, or a film director, or an actor.
I’m taking a gap year right now, currently working to save up for a bit of travelling in January – where to, I’m not sure.
Next year I’m going to read English literature with creative writing at the University of East Anglia.
And life at university will have it’s challenges. For a start, I don’t eat pizza. I could if I wanted to. But pizza contains slow-release carbohydrates, which makes it harder to control blood sugar with insulin after eating it. So I tend to avoid it.
I also don’t really drink alcohol, and I definitely don’t get ‘sloshed’. Alcohol puts a strain on the liver which has a knock-on effect on blood sugar control, causing it to fluctuate. Mixing booze with my insulin medication means there is a risk that I could have a hypo. If this happens at night, it can be particularly worrying.
On the plus side, diabetes has forced me into making healthier decisions about what I eat, and what I avoid. But feeling disconnected from the social scene can be quite upsetting.
My twin sister Martha lives a very different life to mine: she drinks and eats normally because she doesn’t have diabetes. It’s tough, but there is no escaping this disease.
A close friend handed me a shot of tequila at a party recently and shouted: ‘Down it! Down it!’ I wanted to have fun, but I would be taking a huge risk.
A big part of managing diabetes is handling how other people feel about it, whether that’s friends who may or may not think I’m being boring, or my parents’ worries
I looked at my friend, and said ‘No thanks’, and gave him the shot. He looked disappointed, but I know I made the right decision.
A big part of managing diabetes is handling how other people feel about it, whether that’s friends who may or may not think I’m being boring, or my parents’ worries.
Thanks to the Freestyle Libre, Dad is also able to remotely monitor my blood sugar levels via his smartphone. I don’t see it as in invasion of privacy, or feel I’m being watched over.
You see, I know I’m OK, but it helps him to know that too, which is a good thing. Once I’ve left home, he might stop, but if he doesn’t, it doesn’t bother me.
It was strange to read the first piece my Dad wrote for this newspaper in 2009 about my illness.
He feared for my future, which I never have.
Treatment advances mean that this once fatal disease is now manageable with a bit of effort. Yes, there are days when it can feel almost impossible to deal with, but that just motivates me more in the end. Diabetes is a challenge, not a catastrophe. It is difficult, but never impossible.
Perseverance is essential.
He is still alive! And so are his parents, though only just. Ten years after Sam’s diagnosis, a young adult is ready to leave home and ready to find his way in the world. And my wife Sarah and I are ready for a rest.
Not a physical rest. Sam has looked after himself for years now. But mentally: from the constant out-of-one-corner-of-the-eye monitoring, chivvying, worrying. You cannot help yourself: ‘What’s your blood sugar number?’ ‘Is that a bit high, or a bit low?’ ‘How many carbs in a peach?’
I said in my piece for this newspaper all those years ago that a chronic illness in a child changes everything, and it does. It tightens something inside you that can never be loosened again.
I also said that I was all too aware that other parents have received worse diagnoses.
And after ten years of coping with Sam’s condition I am even more aware that, as he puts it, type 1 diabetes is a challenge, not a catastrophe.
I talked about a cure. Well, there is no cure and, frankly, little prospect of one in Sam’s lifetime.
But (and it’s a huge but) as Sam says, there is massive progress on the kit and caboodle that can help you cope with type 1 and control it in a fashion that gives a more decent chance of a long and healthy life. So there is progress.
And we have brought up a boy who has a sense of humour and a love of literature and travel; a boy who must struggle to keep well and has much more to cope with than most young men, but who is not defined by his condition.
Ten years ago, if I could have settled for this, I would have taken it like a shot. Here’s to the next ten. And if you have type 1 diabetes in your life: good luck.
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