Sugar and Spice

…and all things nice…that’s what little girls are made of, right?

We all know the poem.

But anyone who knows a little girl with Type 1 or Juvenile Diabetes, also knows that too much of the sugar part does more than spice up their life…it can actually take it away.

It’s a frightening thought, and one that’s always hovering on the edge of our minds ever since my beautiful niece was diagnosed 6 years ago, at age 9.

Let me put it this way: there was a display recently- 15,000 hypodermic syringes stuck into the ground in the middle of Martin Place in Sydney. It was to demonstrate the number of needles a child with Diabetes will have to use by the time they reached the age of 15.

My niece is 15 and the needles just keep coming.

It’s a truly cruel condition that too many kids are affected by, and too many people know too little about. As I write this, about 140,000 Aussie children have been diagnosed.

When my niece developed the disease my sister was told that "there might be a cure within the next ten years". 6 years and counting and that answer’s still out of reach. But at least they have made some fabulous progress in that time.

There’s the artificial Pancreas, Islet transplantation, and while not an ideal solution, there are now pumps that can be installed, which sends out doses of the vital insulin, and cuts out a lot of the injections. The pump itself is a little box similar in size to a pager; the user wears it and it delivers the dosage needed over 24 hours. The downside is that the amount of finger pricks needed for monitoring blood glucose levels is tripled- yep these kids have to do up to a dozen a day just to make sure everything is working as it should.

Because if that blood sugar gets out of whack the complications can be deadly: blindness, kidney disease, heart disease and stroke, and sometimes nerve damage which can lead to gangrene and amputation. Whether low or high blood glucose, it’s a fair bet that there’s a shortened life expectancy. Thankfully, current info shows that the rate of these serious complications is lower than it used to be. Thank Heavens for small mercies.

But if you have ever seen someone you love go through a “Hypo” you know just how scary this thing is. And how helpless it can make you feel, even as a bystander. (Even Rob Thomas sang about the struggles his wife faces, in his song "Her Diamonds".)

It’s truly terrifying if, like 80% of cases, no one else in your family has it, so there's no one to turn to, to help you understand why your body’s turning against itself. And I cannot even explain how it feels when your child has an autoimmune disease and know you didn’t cause it, but know you can’t cure it either.

And until a cure is found, a child with diabetes will have it into adulthood. While not necessarily a life sentence, it is certainly life limiting.

Imagine having to weigh up every single mouthful. Or counting every carb in every bite you take. Imagine having to sit with your friends at the movies and just watch as they tuck into the requisite popcorn or cola or choc top ice cream.

Imagine having to watch the clock and stop what you’re doing no matter how much fun you’re having, just so you can stab yourself in the finger and squeeze out some blood to test your glucose levels. Then imagine having to measure up the insulin, pinch your skin and stick a syringe in.

My niece is one of those awesome kids who took on the management of her medical condition at quite a young age- within months of being diagnosed she was injecting herself. It makes me smile through the tears at how inspirational these children can be.

So if you’ll forgive me, I’m going to take a little poetic license here and rewrite that rhyme, in honour of my gorgeous god-daughter and niece who makes me proud every single day with her maturity…

What are little girls made of? Spirit & strength, at unbelievable lengths.
That’s what these little girls are made of!

My apologies to Mother Goose, but if her child had diabetes I’m sure she’d understand.

Jx
©2009

NOTE: To find out more about the Federal Government’s Insulin Pump Grant, or to help the Juvenile Diabetes Research Foundation in their quest for a cure, just follow the links.