Help Us Get Nova Ray a Diabetes Alert Dog

Nova's Diabetes Diagnosis

Nova "Noni" Ray Barth was diagnosed with Type 1 Diabetes this past October at just two years old. She was in the hospital for about a week, most of which was spent in the Intensive Care Unit, and was experiencing Diabetic Ketoacidosis, a life-threatening complication. At the end of the week, she was discharged and sent home with her parents, Emily and Donny, where they would spend the next few months trying to understand this disease.

The Barth family's lives have been heavily impacted and their every day looks very different now than it did just a few short months ago. Nova's well-being is worth it all and they're incredibly grateful she's okay. It doesn't change that every single day managing this disease is an overwhelming struggle.

I never really understood the impact a Diabetes diagnosis can have. I had no idea how much it can flip lives upside down, leaving those affected holding on for dear life. Diabetes is a well-known and highly-researched disease and there are education and guidelines out there for everything, right? Wrong.

From the conversations I've had these past few months, I've realized how much most of us don't understand. And I don't think many of us will ever really understand unless we have the misfortune of it touching someone we love and care for.

Emily and Donny have determined welcoming a Diabetes Alert Dog into their family would tremendously help manage Nova's type 1. She's currently using a Dexcom, but this monitoring system can be very unreliable, sometimes being off by as much as 50 points. Nova falls into hypoglycemia at least once a day right now. Hypoglycemia is a dangerous state for her to be in and can lead to serious short and long-term health complications. Diabetes Alert Dogs are trained to help when their owner's blood sugar is too low or too high. The problem is, this helpful and intelligent animal will cost their family about as much as a new car.

Emily was establishing a very promising career in the Arts before Nova's diagnosis. She chose her daughter, of course, without hesitation, parting with her salaried position. She does her best to work part-time hours when she can, but it's close to impossible. This leaves Donny as the sole financial provider for their family of five. The Barth family's expenses have increased dramatically since Nova's diagnosis, while their family income has dwindled.

The hours of researching, learning, understanding, observing, testing and adjusting are endless. The reality is it's an incredibly overwhelming amount of work for her parents to take on, while also working and raising their two other daughters, Lily and Wren. Every move Emily makes throughout the day is made with Nova's disease in mind, from her precise meals to their many walks and trips to the playground. This is all necessary to try to keep Nova's blood sugar as close to a safe level as possible.

I asked Emily to break down a day in her life so we might better understand. I thought it was important to shed a little light on the impact this disease has and how much it changes lives.

A Day Managing Type 1 Diabetes

Around 3 am, usually just before my alarm wakes me, I walk into the little girls’ room to check Nova’s CGM receiver. If it’s above 80, I go right back to bed. If not, I sit and watch. My daughter is type 1 and currently not using any insulin. We started off with daily long-acting and meal coverage right after being discharged from the ICU, but now even the smallest possible dose is too much for her. Yet, somehow, she still manages to fall into the hypoglycemic range at least once a day. I wait for it to climb back above 80 and then I go back to sleep.

At 5:30 am, my alarm wakes me for the day. First, I check Nova’s receiver, even though I know where it will be by now. Somewhere between 70 and 80. Then, I fly to the kitchen to get her breakfast ready before she wakes. I try not to be anxious, but I am. I know that she’s gonna start coming down as soon as she sits up and that she’ll likely drop another 8-10 points while eating. At which point, the alert will go off, adrenaline will send a shockwave through my body and I’ll inwardly panic while trying to act nonchalant about getting her to finish her breakfast. She’ll finish eating, come back up to a comfortable spot, I’ll give her the slew of supplements and vitamins and go get dressed to take the older kids to school.

After drop off, I hurry through some administrative work at my desk and then pack a bag so we can head out for fresh air and exercise. Receiver, glucose meter, juice box, mandarin orange, a container of blueberries, a couple of pieces of cheese, 1/4 cup measuring cup and the glucagon pen. Which I still don’t know how to use. The endocrinologist said, “ask your pharmacist” and the pharmacist said, “ask your endocrinologist.”

More often than not, we just head to the playground. A friend meets us there and she asks how I am. I try not to go on and on about diabetes, but I do anyway. Nova has an absolute blast climbing up and down and under and through. Running around without a care in the world. I obsess over the receiver. Wrangle her in for a handful of blueberries when she starts to dip, setting her free again as soon as they’re gone.

We head home a little before noon, with the usual protest of a toddler that does not want to stop playing. I don’t blame her. I want to stay too, but she’s gotta eat. We unload and she’s off to the backyard while I throw together some lunch. Considering what her numbers looked like after breakfast, during the morning and right now. How many carbs should I give her? What kind? In what order? Less or more of a supplement? I give it my best estimate and she eats.

After lunch, we head out for a walk/scooter ride. Hitting all our favorite spots, picking flowers, and choosing a book at the little free library. It is hot and I am tired, but she loves it and we’re burning off some sugar.

The minute she falls asleep at nap, her numbers start to spike. Jumping in 10-point increments until they’re just below the high end of her target range. I try not to sit and watch. I’m getting better about letting my phone lose connection, so I can sit down and get some work done without holding my breath. Because really, she’s fine. She’s asleep and she’ll come back down as soon as she wakes up. I tell myself over and over.

Around 3 pm I wake her so we can go get her sisters. She’s pretty unhappy about it and again, I don’t blame her. I pack the bag: receiver, glucose meter, juice box, mandarin orange, a container of blueberries, a couple of pieces of cheese, 1/4 cup measuring cup and the glucagon pen. Just in case. I also grab the snack I actually plan to give her. It’s gotta be something that will help bring her down (protein) but keep her in a good spot until dinner (low glycemic carb). Pistachios usually do the trick.

We pull up to school and head inside towards the VPK class to pick up Wren. It’s at the end of a long hallway and I encourage Nova to walk. I nod and smile and this time answer “pretty good!” when asked how I am. I check the receiver. Reassure myself.

Wren doesn’t want to be picked up. Her teacher needs to talk to me. I try my very best to be present with them both, but I’m not. Lily meets us at the front of the school, says her day was “good” and we load into the car.

The needs, complaints, requests and feelings flood in the minute the car is on. They’re valid and expected at the end of a long school day. Again, I try so hard to just hear them. But, I can’t. Sometimes I cry.

Everybody heads into the backyard to play while I make dinner. Quickly, because she’s coming down fast now. Nobody wants it. I get it. But, they have to eat. Nova has to eat. If I don’t get enough food in her before bed neither of us will sleep.

Everybody survives dinner and most evenings there’s a kitchen dance party for the little girls. I rush through the dishes and hop back onto the computer to finish up my day’s work.

The dance party is over and it’s time for bath. I don’t know if it’s just the timing, or the bath itself, but here comes the post-dinner spike like clockwork. Inward panic, outward a very poor attempt at cool and collected. They see right through me.

After bath, it’s pj's and lots and lots of games. That sugar spike does not make for a calm, relaxing bedtime routine. I’ve accepted that. We try to get some books in. We used to be so good about reading every night, but somehow it doesn’t seem to happen anymore.

Sometime around 8 pm the little ones are asleep. I check the receiver. Make sure it’s close enough to the baby monitor. Check it again and leave the room. Making a request, out loud, that she’ll be ok throughout the night.

Once Lily is tucked in, I climb under my covers too. I usually cry a little as I settle down. Not enough to be noticed by anyone. More like a slow leak. A decompression. I beg myself to be more patient with everyone tomorrow. To do a little better. I try to get some sleep.

An alert sounds. My heart is in my throat before my eyes are open. There’s no emergency though. Just a sensor error. No alerts or readings. Do not remove. Wait up to three hours. A lot can happen in three hours, I think. But, there’s nothing I can do about it. Eventually, I go back to sleep.

Help The Barths get a Diabetes Alert Dog for Nova

I share all of this with you to show you, this beautiful family needs our help. They are handling their new reality with as much grace as humanly possible, but sometimes we all need to lean on our community and accept the support we so desperately need.

I ask you humbly to give The Barth Family the gift of a Diabetes Alert Dog for Nova. Our whole family would be so grateful if you're able to contribute. Nova's Diabetes journey will be a long one, but she will persevere, with all of the wonderful people in her community rallying behind her.