I had the chance to read last Sunday's papers and found this article interesting. Although my son's condition is different from the author's son's, I too wait for a cure. I'm a highly risk averse person, so I'm waiting for proven research on the use of stem cells in "treating" cerebral palsy.
The article below appeared in the Sunday Telegraph.
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All human life passes through the Today programme studio. A world-class sprinter comes in, a senior politician, an author of self-help books, a comedian, an economist, a musician. Their stories come and go – moments of mini-drama spatchcocked between the news bulletin and the weather. As a presenter, you always have an eye on the clock and on what is coming next. Well, almost always.
Last week, as my colleague Sarah Montague was interviewing someone, I felt a sudden desire to burst into tears: it was, as they say in cheap thrillers, personal. The interview, utterly routine, was on the subject of stem-cell tourists, who take sick relatives to dodgy foreign hospitals in order to receive stem-cell therapy of dubious benefit and possible harm. There was a warning (from the Government or the doctors, it matters little) that people should be careful.
As Sarah and her interviewee were talking, I saw clearly and inescapably the sleeping face of my 10-year-old son Sam, who has an auto-immune disease, Type 1 Diabetes. Before I had left the house at 3.15 that morning, I had gone upstairs to prick his finger, fiddling about in the dark for the equipment and waking him in the process. As ever, he had been sweet and stoical as I checked his blood and administered insulin. He went back to sleep and I went to work.
But the truth is that my wife Sarah and I carry his illness with us like an extra piece of luggage; it comes with us on holiday, it sits reproachfully next to us at a jolly lunch with friends, and it stalks us in the office.
We know deep in our hearts that when someone suggests that a cure is at hand for the illness that threatens our son day and night, we would do anything to seize it. We would go to any hospital anywhere. Not because we are stupid, but because we love him.
By all means let us hear the warnings about the dodgy stem cells, and let us heed them, but let us not forget that seeking cures for sick relatives is a basic human desire; it is a good thing, not a cause for finger-wagging.
The fact is that we are not rational in this area of our lives, and nor should we be. A year ago, making a Radio 4 documentary, I interviewed a stem-cell expert at Harvard University who is working on Type 1 Diabetes. I was secretly horrified when he announced that he was knocking off early that day. Did he not realise that every minute out of the lab was a minute wasted! Could he not do night shifts as well?
Later I visited another Type 1 researcher who has what most people believe are rather crackpot theories about the causes of the disease and how it might be cured. She finds it difficult to get funding from traditional means but on her notice board she has cards and letters from around the world, sent by people who have enclosed money to help. Are they mad to place their cash on this long shot? No: they are human.
And I know what many of them are thinking. They know that in 1921 in a hospital in Canada, two doctors decided to act on their hunch and try giving a child dying of Type 1 Diabetes insulin derived from cows. Fourteen-year-old Leonard Thompson had been carried in by his dad, very close to death. From the dawn of time until that day everyone in the world who had developed Type 1 had died within weeks: there was no escape. They injected Leonard and he woke. They rushed round the ward injecting the other children as well – surely one of the great medical miracle stories of all time. Leonard Thompson lived into his late twenties.
In other words, those of us afflicted by this disease believe in miracles because all our children have been saved by a miracle. You can tell us that stem-cell therapies are untested, and we can respond that so was the insulin used on Leonard Thompson. We live in the rational world where all this talk of cures co-exists with a day-to-day reality that says you just have to get on with it; but we have our faith.
I do not exaggerate when I say that I begin every day with a glance at a Google alert that says "Type 1 Diabetes" and "cure". So far no luck: but a huge effort is under way and in Sam's lifetime it is not impossible. The wonderful fundraising efforts of the Juvenile Diabetes Research Foundation have already had a significant impact in reducing the capacity of the disease to kill.
Nowadays a person in the western world who develops Type 1 Diabetes can expect, with luck and frequent blood-sugar checks and insulin injections with every meal, to live much longer. But it can be a pretty miserable life, particularly if you are undisciplined or poor. Family days out get very difficult when insulin needs to be transported and kept cold, when fruit juice is forbidden (too many carbohydrates too quickly absorbed) and when parents are exhausted and worried.
Having said that, I am deeply, painfully aware that our travails are minor compared with those that some parents suffer. Sam is still Sam. He is happy and affectionate and full of vigour and ambition. He is a classic case of the value of modernity. When people moan about our culture, the priorities and the fixations of the modern Western world, I think of Sam, who is cared for by NHS doctors, using insulin made by a US company. From the very moment he was diagnosed and rushed to hospital, he has benefited from the care and intellectual effort and wealth and pro-life priorities of the modern world. To suggest otherwise, as Jeremiahs sometimes do, is to be disrespectful to the many people who devote their lives to caring for those with chronic illnesses, and, frankly, to the UK taxpayers who bankroll the whole enterprise with good grace.
One good thing has come out of Sam's illness. It is pretty small but here it is anyway: I think I am better at my job. Too many reporters are insulated from the distress of the world. As a young man I travelled to wars and famines and felt sympathy but never attachment. To those folks rushing off for the dodgy cell therapy, I now feel a genuine closeness. I also feel angry when I see Sam's disease misreported – confused, typically, with the more common Type 2 Diabetes that you generally get from over-eating. Too many medical and scientific stories are lazily reported: now I know the distress this can cause.
As for Sam, he is fine. He wastes no time at all fretting about cures and miracles. That's for Mum and Dad. We'll do it for him. And if one day I turn on my computer at 4 in the morning and someone in Timbuktu has found a cure, I shall wait until 9am, then I'll be on my way before the pips have stopped sounding...
Justin Webb presents the 'Today' programme on Radio 4
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