Niko's Safety Net of Champions

For: Nikaela
Organizer: The Nelson's
of $5,000 goal.
Raised by 1 donor
4% Complete
This fundraiser is closed. Thank you for your support!

The Story

Normal - but not so normal
Our daughter Nikaela's outlook strikes us as simply amazing. She refuses to be regarded as anything but your typical teen. Diabetes is the quintessential invisible disease. Day after day, type 1 diabetics work amazingly hard behind the scenes to achieve the same quality of life most of us take for granted. 24/7/365 - no breaks, no holidays. Even with that careful management, complications happen, as we've learned these last few months.

Niko frequently experiences low blood sugar levels (hypoglycemia),especially at night while she's sleeping. Worse, she doesn't feel them anymore. We work hard to catch and treat these lows. We set alarms to wake us every three hours so we can get up and check her blood sugar. Most nights, she ends up treating a low with fast acting carbs like juice or skittles. Despite the unhealthy disruption of sleep, it's necessary. Left untreated, hypoglycemia causes neurological damage, seizures, and ultimately death. 

Some nights,we get less than 4 hours of sleep, and every night we send Nikaela to bed with a blood glucose level well above the safe range established for kids. Over time, those higher levels result in heart disease, peripheral nerve damage, blindness, and even amputation. 

Focusing on the Positives. Nikaelarefuses to allow diabetes control over her life, and possesses long term, high aspirations. She maintains top grades, works extra hours to earn tuition towards competitive volleyball, and has her sites on a future spent helping others. Even so, interrupted sleep over the last three years is beginning to take its toll on her long term health. 

Recently, we experienced two of what we deem the unthinkable. Nikaela had her second seizure due to hypoglycemia, and at her latest endocrinology appointment, we learned that she's already losing nerve sensation in her feet. Both mean we must be that much more diligent, and the staff at BDC regard Nikaela as theModel Patient.

The Tandem tSlim insulin pumpallows diabetics like Niko the ability to microdose, and better manage insulin needs over time. The Dexcom CGM Systemaccurately reads glucose levels in real time, with a receiver that remains accurate up to 20 feet away. With these tools, we can stop borrowing against Nikaela's future health and ensure her safety today. Yet, even with insurance, these necessary, life maintaining tools sit outside our reach.

Please, help us provide Niko with the tools needed to manage her diabetes, give her more uninterrupted nights of sleep, and provide greater options to navigate the highs and lows of diabetes.  Help Nikaela achieve her dream of one day helping others, because contrary to what she'd have us all believe, she's far from normal. She's Extraordinary. 

Fundraiser Updates

Posted on September 1, 2014

Posted on September 1, 2014

Many of our family and friends may recall that we attempted to fund raise for a CGM system about four years ago. We remain beyond grateful for the generous support of those who contributed at that time, helping us to raise about $1800 - nearly 1/2 the cost of the anticipated start up costs. 

Without the Dexcom G4 continuous glucose monitor, Nikaela likely would not be with us today. Dex caught many stubborn and persistent lows in the wee hours of the morning, one, just in the nick of time to catch the onset of a hypoglycemic seizure. The what ifs remain heart stopping.

The technology isn't simple, cheap, nor does it last forever. In fact, the manufacturer warranty on the receiver is 12 months, and on the transmitter a mere six months. Technically speaking, the schedule demands that every 6 months we shell out $799, and every 12 months we attempt to cover an entire new system for $1199. The monthly cost of sensors? $450 / box of 4 when the dedcutible needs to be met, half that once we've done so. Ouch.

Right!We made our first system last nearly 24 months, but part of that meant inconsistent use. This in turn resulted in uncovered moments that really shouldhave been covered - thankfully luck, happenstance, and her guardian angel saw us through those times. With Niko in high school, we simply can't afford to play Diabetes Roulette anymore. Niko mustwear her CGM system 24/7 to help manage hypoglycemia and prevent seizures. 

We thought about a diabetic alert dog. Not only do they run upwards of $10k, but they bring with them a loss of normalcy, the ability to manage her care subtly and without all the pomp and circumstance of a DAD.  

And then there's the pump. Her minimed paradigm revel sported 13 motor failures in 18 months of pumping insulin. 13! That's thirteen unlucky opportunites to narrowly escape the unthinkable. So, with her endocrinologists help - we bit off the impossible. After experiencing an A1C increase of more than 1 point (a number highly correlated with heart disease, nerve and kidney damage, blindness and amputations), we bailed ship and hopped on board with Tandem for their tSlim pump. Wtih insurance our share runs $3000, and supplies for that alone top $300 / month. 

We may feel a bit like we're on the financial Titanic right now, but in three months of tSlim use, her A1C dropped 0.8 points... that's almost unheard of. Niko plays nearly everything by the book, exercising tight control (beyond uncommon in teens), but the device clearly makes a difference 

The sad truth? We can't keep it, these wonderful lifelines in the form of a medical devices that keep her alive. We can't keep the, unless we cover the payments, the supplies we've used, and order the next set of sites, cartridges, tubing and accessory supplies. 

Not without help.

$5000 gets us not quite three months into the future, allows the past to catch up, and gives breathing space to cover all we haven't mentioned - insulin, test strips, ketone strips, meter costs, syringes, fast acting glucose, quarterly endo visits. 

And yet, we know it's asking a lot. Which is why I've shared so much, why we will always remain 100% transparent with you, Niko's Champions.

We can't do it without You, and remain deeply indebted to your kindness and support!
The Nelsons 

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