THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Thursday, February 10, 2011

Now.

A CURE.

I swear I feel like that concept could eat me alive sometimes.  It's everywhere...repeated over and over by diabetes advocacy organizations...woven through blogs and other social media venues...pleas for financial support to expedite A CURE.

People have waited entire lifetimes for their CURE.

Science has been pursuing A CURE for decades....BILLIONS of dollars have been poured into science labs all over the globe...theories have been pondered, disproven, and sent back to the drawing board.  Mice have benefited from cure technologies that can't be translated to humans.

All of that time.  All of those resources.  Yet my daughter still has type 1 diabetes.  By the time I figure out how to get the words out of my brain and into your computer screen, another family will have gotten the news that their child has type 1 diabetes too.  By the time I hit enter to publish this post, another child will have died because of type 1 diabetes.

That being said, I've been pondering -- REALLY PONDERING -- why a cure for type 1 diabetes continues to escape reality.  I mean...if it could be bought, then collectively we have most definitely paid the price.  I have no idea the final dollar amount we'd end up with if we added together every single dime that has been poured into a cure for type 1 diabetes.  Same goes for time.  People whose lives have been affected by this disease have certainly waited their turn while other causes have been pushed to the front of the line.

What if the cure CAN'T come out of science alone?

No one can prove why my daughter's pancreas stopped producing insulin.  Even still, her type 1 diabetes remains evident.  By the same token, science hasn't been able to prove there isn't a God, but that doesn't mean He ceases to exist.

What if there's a bigger plan that involves more than just science?

What if it means reaching deep down inside our Candy Hearts and finding a way to provide insulin -- the most basic need for a person with T1D -- for people who cannot access it?

What if it means praying intently for THEIR needs instead of solely for a cure?

What if it means sacrifice?

I know this might seem hard to believe, but do you realize that there are T1 Parents who have no idea what Twitter, Facebook or a blog is?  They aren't able to Google symptoms, insulin management, or technology options.  Parents who probably haven't ever clicked a computer keyboard in their entire lives.  Parents who can't fund raise for a cure, because there are no cure-focused organizations advocating for them and, besides, they're hardly surviving with the limited resources they've scraped together.  Right now, as you read this, there are parents being forced to choose between life-saving insulin for one child and food or shelter for the rest of the family.  They must travel for hours by foot before reaching an overcrowded clinic once or twice a month to obtain limited amounts of insulin in order to keep their child alive long enough to make the journey all over again.

They love their child no less than we love ours.

I am NOT suggesting that you stop supporting the cure-focused organizations you believe in. I do, however, feel that our community has a responsibility to consider the global crisis that exists, and stretch farther than we ever have before to find a way to address it.

NOT just on November 14th.

INSULIN WAS DISCOVERED ALMOST 100 YEARS AGO!!!!

How is it possible that people -- CHILDREN -- are dying every single day because they cannot access it?  If they can't access insulin now -- nearly 100 years after the fact -- how on earth will they EVER be able to access the "cure" should one ever show up?

Each of us must be ready and willing to respond to this catastrophe...ESPECIALLY if we are asking people to reach into their pockets to support our fund raising efforts for a cure. How can we POSSIBLY ask someone to, for example, sacrifice their daily coffee and contribute to our cure-focused initiatives instead; if we aren't willing to sacrifice our own to allow someone else's child to SURVIVE?

Science has had it's turn.

A CURE will never be possible without the hand of God as a part of it.  We may forever be "just around the corner" or "5 - 10 years away" if we continue to put all of our faith, time, and resources into science labs that repeatedly cut God out of the equation.

It's time for humanity to prevail.

NOW.
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6 comments:

  1. You go girl!

    Everyone should have access to insulin. Period.

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  2. So well stated Wendy. And...so true. What can we do? Did you ever hear back from a JDRF Rep on this very issue?

    Again...so well written. Thank you. It was you that started my vision of this sort of funding and a foundation of sorts. I whole-heartedly agree...these people love their children as we love ours. They deserve access to insulin as much as any of us. The Diabetes "haves" and the "have nots" illustrated in a painful portrait for sure.

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  3. Love it! My husband, my T1 son, my daughter and I pray nightly for God to cure Parker's diabetes. He can use science, prayer, whatever he chooses. We believe! I have thought about the same things with my line of work. I treat underprivileged patients everyday and can't imagine how hard this diagnosis is on their families, if it is hard for my middle class family.

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  4. Hi Wendy,
    You have such a giving heart! God is really placing outreach on your heart. Does anyone here know of a diabetic family in need? Maybe we could help?

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  5. My MIL Has actually asked me recently if I have heard of a local organization that does fundraising efforts or anything for families who can not afford insulin and have no health insurance to pay for diabetic supplies. Unfortunately, I told her no, as I have not heard of anything local.

    And, its really sad too, because I know many people in our area, as well as world-wide, who do have a hard time providing for their children with diseases, and are unable to afford insurance, but make just a little too much to qualify for state assistance. I do, however, know that in our state, public assistance will automatically qualify your child for medical assistance if they have a chronic disease, such as T1, regardless of your income. I also know that for those without children with chronic conditions, but who make too much to qualify for medical assistance, our state offers S-CHIP (which is what we have had our children on since before Lenny's diagnosis), which has no income eligibility requirement. I think people in my area personally, just need to be educated on what options there really are for them in our state.

    You are right though. It is incredibly sad that there are still families out there, even in our own country, who struggle to provide necessary medical devices and medications to their children with chronic illnesses like T1. I know that not all states have medical assistance set up the way the state of PA does, nor do all states offer S-CHIP like the state of PA does, therefore, it causes several PWDs pay out of pocket for all diabetic supplies, which are extremely costly! It should be something taken to our government, the White House, and brought to the attention of our President and First Lady. Our First Lady is a big advocate of childhood obesity... well, how about becoming an advocate for OUR children too! Our children, living with Type 1 Diabetes, and Our Families, having to pay out of pocket for life-saving medical necessities, like Insulin,syringes, Test Strips, Lancets, and Meters...at the VERY least, those things!

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  6. AmAzInG!!!!! You are amazing! So well said. Thank you once again for making me think "outside of my own little box". Love you!!!

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.