Sometimes its the small things
ONE hundred kids sat down to a lunch in Parliament’s Great Hall on Thursday, only the menu on every table offering a hint there might be a distinction between these and any other children. Each plate of chicken breast with kipfler potato, zucchini and sauteed spinach, the menu informed, equated to 24 grams of carbohydrate. A slice of watermelon was 1.3 grams, ruby grapes were 0.75 grams apiece.
Most of us wouldn’t have a clue why such esoteric detail would be of interest, but virtually every kid in the House and all their parents studied the numbers with intent. Carbohydrate, essentially, is sugar, and if you happen to suffer diabetes type 1, you must know precisely how much sugar is in your food, and therefore headed to your bloodstream.
The irony for those with type 1 diabetes is that sugar is both your friend and your enemy: you need a certain amount in your blood to keep your body operating and your brain sparking, but too much will cripple you.
You must discover, before you start, your body’s existing sugar content, which requires you to prick your finger, draw blood and test it with a little electronic device. Then you must calculate how much insulin has to be injected into your body to deal with the sugar in your food, which is why a menu with detail about grams of carbohydrates is handy.Advertisement
If you do not inject enough insulin, your blood sugar content will soar and you will become very ill indeed. If you inject too much, your blood sugar will plummet and you will lose grasp on reality and head towards unconsciousness.
Either way, if you do not receive help, you will eventually die. It’s a delicate computation, performed several times a day. It’s not hard for it to go wrong.
And there, in bite-size detail, is daily reality for the 122,300 people in Australia diagnosed with diabetes type 1, also known as juvenile diabetes. Another six, most of them children, are diagnosed every day. Type 1 really ought to have another name, for it is a more terrifying beast than the much more common diabetes type 2, which is often considered a lifestyle disease and can be controlled by medication, diet and exercise.
Type 1 arrives without warning and has nothing to do with obesity or lack of exercise. Your immune system goes haywire, attacks your pancreas and suddenly, irrevocably, denies your body the ability to produce insulin.
From that moment, you must learn about carbohydrates and blood sugar, and accept that hypodermic needles or an insulin pump will remain your constant companions. For as long as you live.
Virtually all these people will come to conceal a secret: they fear going to sleep, afraid that they might not wake up. Sometimes, they do not. There is no cure.
A 15-year-old girl from Adelaide, Shanna McGrath, was MC at Thursday’s Kids in the House luncheon. The event is organised annually by the Juvenile Diabetes Research Foundation to confront politicians with the truth about type 1 in the hope that decision-makers might find and grant the money necessary to support research towards development of an artificial pancreas – tantalisingly close – or the great hope, a cure.
Shanna told all those in attendance that since she was diagnosed with type 1 at the age of six, she has pricked her fingers 25,000 times. She loved life, but was never OK with the stress and anxiety that accompanied the knowledge of her disease, she said, nor all those times she has felt sick and exhausted.
She introduced Oscar, 8, who declared type 1 was ”annoying and I hate it – it makes me tired and the needles hurt”.
Many in the audience, including this reporter, wept as Justin and Lyndall Haydon, a policeman and a teacher from Sydney, told their story, their three-year-old daughter Mikayla scampering around the stage. Most of us knew precisely what the Haydons were talking about.
Mikayla was diagnosed with type 1 at 11 months. She almost died. Since then the disease has ruled the family’s life, and the three-year-old has had her fingers pricked 7000 times.
All the trips to hospital, the exhausting business of checking Mikayla’s blood sugar all day and at midnight and 3am, the need to force-feed her sugar or to resort to a glucose injection when she lapses into a sudden low – known as a hypoglycaemic episode – and to seek medical attention when her sugars rage high …
Her parents have used all their leave, have drained their savings to the point they can’t hope to buy a house, and rely on extended family to help raise their spirits, or to cry with them.
”We nearly didn’t make it here today,” Lyndall said. On Tuesday Mikayla was raced by ambulance to hospital, and the family was still dealing with her unusually high blood sugar readings.
”Mikayla will have type 1 diabetes every day for as long as she lives unless a cure is found,” Justin said.
A cure, or anything approaching it, will take money. The Juvenile Diabetes Research Foundation has raised $1.6 billion worldwide and more than $100 million in Australia, nearly all of it through the efforts of type 1-afflicted families.
Now researchers have established a clinical research network to throw all their efforts into developing better insulin pumps, an artificial pancreas, trials to transplant insulin-producing islets into the pancreas and other efforts to ease the agony of those who fear their next sleep may be the last. The network needs $35 million over four years: $7 million a year. In federal budgetary terms, it is a paltry amount. The National Disability Insurance Scheme got $1 billion this year simply to begin establishing itself.
Opposition Leader Tony Abbott on Thursday promised the Kids in the House that a Coalition government would provide the $35 million.
The Gillard government’s Health Minister, Tanya Plibersek, came to the lunch and as she ascended the stage, the children and their parents held a collective breath. But when the minister had finished her address, there had been no mention of money.
”Promise to remember us,” said Shanna McGrath as the politicians left to do battle over a 20-year-old slush fund.
Tony Wright’s daughter, Fairfax journalist Jessica Wright, was diagnosed with diabetes type 1 nine years ago.
The type of Type 1 Diabetes article that helps to raise awareness