Sunday, September 18, 2011

Enough is enough - we need to stop the need for burning candles

I try hard not to dwell on the negative. But as I sit here in a hotel room about a bazillion miles from my sweet girl, I can't help but ponder. Truth: a small percentage of type 1 parents are members of the diabetic online community. Truth: Since I joined the community far too many children in this community have died. How many more pass by us unnoticed?

I can't dwell on this. All I can do personally for my "daughter is to help her manage her bloodsugar closely. But we are a community, and there's power in that. Why have we not DEMANDED of JDRF, ADA, and of any doctors and reasearchers who will listen, that this needs attention. Look it up. There are ideas, loose theories, but no one knows why this keeps happening. I read something the other day that one theory is that a low sugar could result in a heart irregularity. Okay... so Mr. Researcher, why have you not selected a hundred kids or so and put a heart monitor on each to see if there's any irregularity during hypos? And while I understand how much pain these families have to be in, has anyone done research to determine as many facts as possible; MDI or pump? Activity, food, insulin in the hours before the death. Insulin in the blood at time of death. Is there any way to confirm long/short acting? Are there any corrrolations with age, race, geography, length of time since diagnosis, other health problems?

I suspect part of the problem is that it is hard to ask these questions. As a D parent myself, I know that diabetes makes parents feel more responsible than probably any other disease. We aren't just responsible for making sure the kid takes a pill each day, we are responsible for their health 24/7/365. How could we not feel responsible when something goes wrong, even though each of us intellectually know that we can't control D as much as we'd like to think.

So here's my plea to anyone who will listen. Let's make this a priority. Even if this takes a small amount of money away from research towards a cure, I want.... We NEED these deaths to stop.

Thank you

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