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Lending a Voice to Juvenile Diabetes

Local Boy Raising Awareness of Chronic Illness and Advocating for Resources
Author: Jen Brignall-Strong
Photographer: Trevor Both
1 year ago
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By the time Kade Tiessen’s family learned he had Type One Diabetes, it was almost too late.

The now 10-year old Kingsville boy was just six when he began to exhibit a variety of symptoms that weren’t adding up to doctors or his mother, Stephanie Segave-Tiessen.

“It was a really weird mix of things; he also had no energy and he was normally a super active kid,” she said. “Type One Diabetes just was not on my radar at all. It was really hard to pinpoint it at the time, but knowing what I know now, I can see it a mile away.”

Stephanie says as Kade’s illness progressed with no real diagnosis, she began to think perhaps it was something psychological.

“He was sick for several months and I remember toward the latter part of it I was calling a child psychologist and thinking that he was depressed,” she recalls.

In addition to the lethargy, Kade was also extremely skinny despite being constantly hungry and thirsty, although the extent of those symptoms was not fully realized by Kade’s family or teachers.

 “I was a working mom, so had I been with him all the time, I would have seen the extent of that and thought to tell a doctor about it earlier on,” she continues.  “The mom guilt is real.”

Kade was drinking so much, Stephanie says, he began frequently urinating to the point of having accidents. Approximately a week before his diagnosis, he became so sick and lethargic they knew something was seriously wrong.

“He had no fever and no other symptoms so we thought perhaps it was cancer or another illness,” she says. “Kade’s grandmother suggested diabetes and as I was researching, I saw something that mentioned diabetes as well and that’s when it all clicked.”

Stephanie brought Kade directly to a pediatrician where he was given a requisition form for blood work to confirm the diagnosis. On their way home from the doctor’s office, Kade began vomiting.

Once they got home, Stephanie began doing more research on Type One Diabetes and happened to stumble across a YouTube video of a young girl the same age as Kade having a similar experience with excessive thirst, hunger, and gaunt appearance.

Like Kade, the young girl became so ill she began vomiting and was admitted to the hospital. Soon after, she died as a result of Diabetic Ketoacidosis; a serious complication of diabetes that develops when your body doesn’t have enough insulin to break down sugar for energy, causing a buildup of acids in the bloodstream called ketones.

“I watched this video in shock and said, ‘Oh my god we’re going to the hospital right away.’”

Stephanie rushed her son to Leamington hospital where he was immediately triaged. After administering a finger prick to test his blood glucose level, they were told to drive directly to Windsor Regional Hospital’s Metropolitan Campus. A blood sugar level of 7 or higher indicates diabetes, and Kade’s blood sugar level was astronomically high at 27.

“They told us, ‘Drive to Met. Don’t stop,” she recalls. “They said there would be a pediatric endocrinologist there waiting for us. It was very scary.”

By the time they got to Windsor, his veins were so dehydrated they couldn’t get an IV into him, recalls Stephanie. Kade was in Diabetic Ketoacidosis.

“When you get into Diabetic Ketoacidosis, everything just stars shutting down,” explains Stephanie. “They can’t just give you insulin to bring the sugar down when it’s that bad. Your electrolytes are completely out of whack so they have to do it gradually.”

Kade spent a week in the ICU, ultimately recovering from the episode determined to fight this new battle and share his story with others in hopes of raising awareness and advocating for more government resources.

Three years later, Kade is doing just that, recently meeting with local MPs Chris Lewis and Irek Kusmierczyk as part of a Canada-wide campaign by the Juvenile Diabetes Research Foundation called “Kids for a Cure.”

“His meeting with both of them was great,” shares Stephanie. “Irek actually told Kade that if he wrote a letter to the Minister of Finance, that he would deliver it to her personally and that he was going to join the diabetes caucus (a committee that meets several times a year to discuss policies and research investments and supports for people with diabetes.)”

Kusmierczyk also invited Kade to join him in Ottawa this February to sit in the House of Commons and get a firsthand look at government process.

“He is so excited to go,” says Stephanie. “The experience has really shown him how powerful it can be to share your story.”

While Kade still has to monitor and balance his blood sugar 15-20 times a day with the help of a continuous glucose monitor and insulin pump, the young athlete doesn’t let that slow him down. Despite his challenges, he plays travel soccer and travel hockey.

“Kade says he wants to help kids like him because it’s just so much when you first get diagnosed,” says Stephanie. “Every time you eat, you have to count carbs, finger poke, and administer insulin; it can be very depressing, so it’s great to be able to show some positive examples of people living with this chronic disease.”

As a parent striving to manage their child’s condition, Stephanie says it’s been important to stay positive and to connect with other families and local resources for support and guidance.

“We have an amazing pediatric metabolic team at Met Hospital that deals with all of the families managing Type One Diabetes,” she says. “As soon as Kade was diagnosed, they did a fantastic job educating us and have just been a wealth of support. The clinic kind of flies under the radar but they really do important work.”

To learn more about Type One Diabetes in children, log on to www.jdrf.ca.

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