Rare Until It Happens to You: The Kycie Terry Story

This content originally appeared on Beyond Type 1. Republished with permission.

By Jordan Jendricks

Jamie Terry doesn’t know what exactly it is about her daughter that resonates so deeply with people. But there’s something about the combination of her curly blond hair, striking blue eyes, and the circumstances around her unfortunate and preventable death that have incredible staying power, inspiring countless others to action.

“There have been many times that I’ve thought about that. There are sick children all over the world, why Kycie? But there’s something about her and I truly believe she was here on a mission. She’s still on a mission. I just think there’s a reason behind it all.”

Because even now, five years after her tragic passing, strangers from around the world still reach out to the Terry family about their little girl. They remember Kycie and her story, which has reached thousands and saved an untold number of lives. Kycie’s father, Josh, has lost count of how many other parents have thanked him, explaining they, too, might have lost a child if not for his daughter’s story.

“I don’t know why it went as viral as it did. I think she just has a face, too. And you can see how heartbreaking it was and how hard she worked to try and get back. If you lose a child or you lose a family member, to think that they died for nothing, it’s that much harder. To know that she’s made a difference in other people’s lives and helped save other people’s lives, and saved a lot of heartache and struggles, it’s more doable.”

Kycie Jai Terry was the second youngest of six children and the only girl. After four boys, Jamie remembers crying tears of joy over her fifth ultrasound and the realization she would finally have a little girl. She remembers her daughter as a vibrant child, who loved to dress up, ride bikes and catch lizards; who was a little bit of everything and unique, as her name suggests.

“I don’t think I realized at that time, but now I think there’s a reason that she has this unique name because you Google her and she pops up and it’s because she needed to make a difference in the world.”

Where Things Went Wrong

Kycie

Image source: Beyond Type 1

Kycie was diagnosed with type 1 diabetes on January 30th, 2015 while in DKA (diabetic ketoacidosis). Where her story differs from many who live with undiagnosed type 1 and go into DKA is that she ultimately experienced cerebral edema, a condition where fluid builds up around the brain, causing pressure and swelling. This complication was occurring unbeknownst to the healthcare providers treating her at the time, wreaking havoc on Kycie’s brain and nervous system as she slept in her ER room bed. Less than 1% of pediatric patients in DKA experience cerebral edema, making it rare, though this statistic was of little comfort to the Terry family. As Josh puts it, “It’s always rare until it happens to you.”

As he recalls, Kycie’s initial symptoms started with a headache, then a stomachache. It seemed like she might have had a stomach flu, then strep. But she didn’t get better with antibiotics; in fact, she worsened. She didn’t want to eat, she only wanted fluids, and she was suddenly remarkably skinny. The Terrys felt an urgency to take their daughter to the hospital as her condition only seemed to get worse. She was extremely lethargic once there, and Josh recalls her fruity breath, a tell-tale sign of ketones. Sure enough, the doctor quickly revealed the cause of the problem: “She has type 1 diabetes.”

But Kycie’s blood sugar was difficult to control. Later, the Terrys would learn that during this time in the ER, doctors were focusing solely on treating her diabetes without realizing that she had experienced any brain damage, or that it was growing worse. With blood sugar readings over 1,100 mg/dl (61 mmol/L), Kycie was in severe DKA and needed to be life-flighted to a children’s hospital five hours away. After landing, she suffered a seizure on the ambulance ride from the airport to the hospital. Four hours later, she was intubated, on a ventilator, unresponsive and in a diabetic coma.

An MRI was completed after Kycie was in a coma for over 24 hours, revealing for the first time the cerebral edema. Doctors told the Terrys that they didn’t expect her to live, but Kycie fought, ultimately coming to breathe again on her own before waking up. She spent the next 111 days in the hospital to relearn basic functions, after which she was able to go home and live with her family for another month and a half, though her life was entirely different. It was suddenly a feat for the five-year-old to hold her own head up, smile, or roll over by herself. Josh remembers feeling torn and heartbroken to see his daughter’s life suddenly so difficult.

“I remember sitting up there and thinking what a horrible situation she was in – a situation I wouldn’t want to be in. If I was in that place, I wouldn’t want to live that life,” he shares. “At the same time, she’s my little girl and it’s my job to protect her and my job to be there for her. It was a really hard place to be.”

Kycie

Image source: Beyond Type 1

The family continued on, taking care of their daughter and treasuring the few good times during otherwise long days. They documented their new normal, sharing feel-good moments and milestones on social media.

Kycie then caught a virus that led to pneumonia and another hospitalization, setting back some of her progress and making her less responsive. Though she was able to return home after growing stronger, in the early morning hours of July 11th, her oxygen levels were extremely low and her parents were poised to take her to the hospital yet again. Before they could leave the house, the second youngest Terry passed away peacefully in her father’s arms. She was a few months shy of her sixth birthday.

Her Legacy Lives On

Kycie is well-known now in the diabetes community, her story having touched so many all over the world. Beyond Type 1’s Warning Signs Awareness Campaign, which began in 2016, was inspired by her story and the reality that both misdiagnosis and missed diagnoses are problems that can be solved through education and awareness. Josh and Jamie both can’t underscore enough the importance of being able to recognize the signs and symptoms of type 1 diabetes.

“To get an early diagnosis is so critical. If you can catch type 1 before DKA, you’ve saved yourself the possibility of brain damage,” Josh explains. “And so that early recognition is so vital, not just because of the scariness of DKA, but because of the unknown that comes with it.”

Jamie reflects on her own lack of knowledge about diabetes in general and how Kycie’s situation truly opened her eyes to a chronic illness that affects so many on a daily basis.

“I knew nothing about it. And the thing that’s crazy with Kycie is it all happened so fast. Within five days, she had a traumatic brain injury,” she explains.

Jamie sympathizes with everyone who manages type 1 diabetes, having gotten a small taste of the complexity of the disease while caring for Kycie’s type 1 diabetes (T1D) the short time she was able: “That’s what is heartbreaking to me. Anyone that ever comes up to me and tells me they have type 1, the first thing I say to them is ‘I’m so sorry’ because it’s so much to take on. And we didn’t even get to.”

The Terry family now advocates for safe and early diagnoses of type 1 diabetes, sharing about Kycie whenever they can and working with local hospitals to help improve type 1 protocols. In Josh’s practice as an optometrist, he lectures others in his field on type 1 and the importance of recognizing changes in vision as potential signs. Their family is continually touched by the outpouring of love for their little girl and all they’ve been through, the community they’ve found through their loss and the surprising amount of good that has come out of an otherwise tragic situation.

As Jamie puts it, “There’s no greater title than ‘Kycie’s mom.’ It will always be hard to live without her, but part of the healing journey has been to know that she has saved and continues to save lives.”

Source: diabetesdaily.com

The New Type 1 Diabetes Detection Program from JDRF

This content originally appeared on Beyond Type 1. Republished with permission.

By Stacey Simms

Stacey: Tell me more about T1detect.

Frank: T1Detect is an education and awareness program about type 1 diabetes(T1D) and its risks, and a very important component of that is making the [autoantibodies] test available to people. Because right now, they’re not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1D diagnosis, when someone has super high blood sugar, they’re in the hospital. Then the doctors will do a confirmation test to see if it’s type 1, we want to make it available to people who don’t yet have symptoms. So hence, T1Detect.

You can go and find the test in a couple of different places. First and foremost is the JDRF website, we have access to information and the test kit button on our website through T1Detect. You click the button, it gives you some information about what it is to have T1D, what the risk factors are, what are autoantibodies.

You click the button you go to the Enable portal, fill in some information, we’re asking for your name, mailing address, things like that. We’re also asking for some demographic information, we want to learn who’s getting to the end, who’s at risk, and that’ll help us improve the program going forward. Then you come to a choice where you can pay for the test, the test is not terribly expensive, it’s $55. To run the test, plus or minus a couple of taxes, you also have the option if you cannot afford the test to have JDRF [help] pay for the test and you will pay for the bulk of the cost.

Right now, it’s not a feature to ask your insurance company to pay for this, but in the future, it will be. All that being done, the test will get sent to you, you’ll get a little box in the mail. It was pretty simple, I did it. You have a Lancet, you poke your finger. Then you fill in two out of four of these circles on a piece of cardboard, let that dry, and send it back. A couple of weeks later, the company will tell you, you have one, two, or three of the type 1 diabetes-specific autoantibodies.

Stacey: What are you testing for?

Frank: Let’s take a little step back to the biology of type 1 diabetes, the biology of autoimmune diseases. Type 1 is an autoimmune disease, and one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that their immune system is doing something that it is not supposed to be doing. In type 1 diabetes, we look for something called autoantibodies.

Now autoantibodies are something that that’s sort of a general term to all different autoimmune diseases. People with multiple sclerosis have autoantibodies, people with lupus have autoantibodies. What we’re looking for in type 1 diabetes are autoantibodies that are specific to type 1 diabetes. What makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. We actually are looking for three of the four primary autoantibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they’re IAA [Anti-Insulin], IA2 and GAD65. Some people may remember those names from TrialNet or other organizations, but there are three of the four that help us diagnose to end and predict your risk…. Based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type 1 diabetes… you may not be symptomatic, but you already have it.

Watch the full interview below:



Source: diabetesdaily.com

Why This Picture Makes My Mother Emotional

This content originally appeared on Beyond Type 1. Republished with permission.

By Esi Akyere Mali Snodgrass

When I was in the 4th grade and attended Roosevelt Elementary School in Iowa City, Iowa we had a school-wide science project called ‘Operation Egg Drop’. The challenge was to have each class pull together their best ‘engineers’ to build a contraption out of edible materials that would be wrapped around an egg that would withstand it being dropped from our school’s rooftop. Marshmallows, powdered doughnuts, Twinkies, snowballs, small cinnamon rolls, and a lot of other edible padding was donated by the local companies and provided in bulk to each class. I squished each individual item in my hands to guess which arrangement would be most successful to protect the egg on impact. Many of the items I had never actually held in my hands. When I opened each package, their scent was overwhelming, and unlike anything I had ever experienced. It lingered and hung in the air.

Sweet Creations

On the big Egg Drop Day, the entire school stood outside and watched as their best attempts were tossed over the side of the building. Each student cheered for the other classes in the spirit of true sportsmanship. My class lost, but it didn’t matter, it was a lot of fun; I remember it to this day. The leftover edible materials that weren’t used for the Egg Drop were divided amongst the students for them to enjoy. I took mine home to my siblings.

A few weeks later, I walked into the classroom and the now familiar, overwhelming scent of sweet packaged materials had filled our classroom once again. Our teacher Mrs. Saunders decided to continue the edibles-turned-building-material theme with a new project. She told us that we were to build a gingerbread house out of cinnamon graham crackers, assorted candies, and frosting. Since our class didn’t win the last event, I was so excited to be given the opportunity to redeem myself from the Egg Drop and to make something great. I was ecstatic and began to sketch my idea out on the provided paper plate. In my mind, I was drafting a blueprint and building a tiny yet deluxe home from Hansel and Gretel.

I had an absolute mansion in mind and used the sugary goop to connect the gumdrops to the walls and to withstand the decorative attic and chimney I planned to add. I was so enthralled with the activity that one would have thought I was building something humans would actually live inside. I delighted in the entire experience. Mrs. Sauders scanned the room, attempting to encourage the frustrated faces of the students who wanted to eat the materials and those who didn’t or couldn’t see the edible materials as anything other than… edible.

Once Mrs. Saunders made it over to my desk, I was giggling to myself with excitement and pure pride that my imagination had built something that was so grand in my eyes. She laughed and took my picture at that moment. Once we had all finished and done what we could do, she gave us all Saran Wrap to cover our creations to set on display for the next two days. Most students had a pile of confectionary rubble and were frustrated from the entire process. On the day we were to consume our creation, Mrs. Saunders gave me this picture to take home. Reinforced with globs of frosting and standing strong on its paper plate, I kept my house wrapped in its Saran Wrap to take home to my siblings to enjoy.

Just a Kid

Decades later, this picture resurfaced and all the memories and feelings of pride, accomplishment, determination, and happiness flooded back to mind. When I showed my mother grinning, she looked teary-eyed and emotional. Confused, I asked her why the picture gave her such a reaction.

‘You didn’t lick your fingers, Esi… You didn’t even lick your fingers…I don’t know how you were able to resist doing that… You were a kid, that’s the most fun part…’

I looked back at the picture, trying to understand what she meant, and I saw the frosting: white and goopy hanging from each of my fingers. I grinned and laughed.

‘Lick my fingers? I was all about building a Hansel and Gretal house, why would I eat my mater-‘

It hit me at that moment, in all the years to that point that I had lived with type 1 diabetes, refined sugar was so far from my consumption experience that I had never, ever thought of eating any of the ‘building materials,’ I was playing with that day myself. It never crossed my mind. It was as foreign of a thought as eating paint or wood. My mother saw her baby girl missing out and wished she had supplied me with sugar-free options or asked the teacher to give me an equally fun yet alternative activity; I saw a goofy kid having an absolute blast.

Perspective Can Determine Our Joy

I say all this to say that perspective can oftentimes determine our joy. There are so many things that many of us humans cannot do: fly without assistance, breathe underwater without assistance, move as fast as a cheetah without assistance, or even process glucose without assistance. Whatever it is that each of us cannot do, it does us no good to sit in the ‘can’t,’ to settle in the restriction. It is futile to focus on the endless lists of things that we are unable to do or experience when there is so much we can enjoy and accomplish… What can you do? What can you enjoy? What brings you joy? How do you turn your pile of ‘edible materials’ into a Hansel and Gretel mansion? How do you turn your lemons into refreshing (sugar-free) lemonade?

Source: diabetesdaily.com

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