Rare Until It Happens to You: The Kycie Terry Story
Editor’s Note: For support navigating life after a Type 1 death, please visit Jesse Was Here, a unique program of Beyond Type 1, providing resources to spouses, siblings, grandparents, and friends in need.
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 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.”
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 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.”
Learn more about Beyond Type 1’s Warning Signs Awareness Campaign here.
Jesse Was Here, a program of Beyond Type 1, is supported by the JDRF – Beyond Type 1 Alliance.