As many of you may know, my niece Aly was diagnosed with Type 1 Diabetes, she is 11 years old. Aly is pretty much a normal 11 year old girl, she loves cheerleading and dancing, and is very active. To talk with her you would never guess she is living with a disease that could alter her life. For her, I have decided to take part in this year's JDRF Tahoe Ride to Cure Diabetes. I am asking all of my friends and family to support my efforts by making a donation to JDRF.
Forbes recently rated JDRF one of the top 5 'all star' charities for cost efficiency. They are currently funding clinical trials on an 'artificial pancreas' - essentially an implanted feedback loop of a glucose monitor and insulin pump. This invention, if successfully funded to market, will dramatically change the quality and longevity of life for diabetics. JDRF funded research has also identified several genes involved in the onset of the disease and a suspected virus as the trigger. Medical science is currently at a point to eliminate much of the hardship, if not the disease itself, during Aly’s lifetime.
I asked my sister Andrea to describe what it is like living with a child with Type 1 and she replied:
“The best way I know to communicate Aly’s diabetes is through a poem I wrote one night when I was up dosing her with insulin, fighting ketones, worried I would induce a low but knowing I had to get rid of the highs.
I wrote this one night staying up trying NOT to go to sleep to see if she was going to come down from a very high BG. Non Type I’s do not understand but I feel like we have to talk and talk and talk and try to help them. No one keeps my 11 year old who doesn’t want me talking talking talking or calling calling calling.
I lie awake as she is high
I worry with each moment that creeps by
I give her lots of insulin but how will I know,
If she starts a coma from a low?
I must stay awake, I must, or I will not know.
What if her body starts ketones?
Before diabetes those were unknown.
Unknown seems like a lifetime ago
Unknown now leads to highs and lows
I must stay awake, has she come down yet?
I'm up and down and sit and fret.
I know I’m blessed with each breath that she takes, Diabetes is treatable for goodness' sake.
Can she still cheer and dance and sing?
Can she still do walk overs and back handsprings?
Can she still be an active little girl?
Of course, her only limit is the top of the world.
I agree with all, we must not dwell, But the Drastic dangers of DKA we must tell.
Diagnosis day felt dark and sinister.
Thank God for visits from our family and our minister.
God and I talked a lot that day,
As I watched her body with some blue and some grey.
I watched the clock and each second tick by,
How could this happen and why, why, why?
I talked to her and prayed and prayed,
Please, please fight and beat the DKA.
If someone you know or even you,
Pees more than you normally do,
If you eat or drink excessively,
get a doctor's appointment, aggressively.
Get a ketone check or whatever they say, so that you don't begin DKA.
If ketones begin, they are toxic to you, And if untreated will lead to ICU.
When insulin is short and the body burns fat, Acidic ketones are produced from that.
DKA is an emergency and can lead to death, So watch for high bg, ketones, nausea, gasping or fruity breath.
Never live like an invalid or like Joe Sickly, But if you have any of the above, GET HELP QUICKLY!!
We live happily on but one thing is for sure, We anxiously await a much needed cure.”
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