Submitted Photo Anthony White Owl performs the grass dance at the North Dakota State Fair in July. Anthony is 10 years old and has been living with Type 1 diabetes for two years.

NEW TOWN – A 10-year-old boy from New Town has been living life to the fullest despite his recent diagnosis of Type 1 diabetes.

“November of 2022 is when he got COVID and he got really, really sick,” said Anthony White Owl’s mom, Heather White Owl.

“We noticed about four or five weeks after this COVID diagnosis that he wasn’t improving,” White Owl said. “He was eating very little, had zero energy, very lethargic, very unlike him because he’s a very active boy.”

“Me, my mom and my dad didn’t really know what it was,” Anthony said about his sickness.

A full set of tests and blood panels were ordered which led to Anthony’s diagnosis with Type 1 diabetes.

“When he was first diagnosed, I had zero idea Type 1 diabetes was specifically an autoimmune disorder,” White Owl said.

Anthony was scared of what this diagnosis meant at first and was unsure what Type 1 diabetes really was.

“About two weeks after his diagnosis, he looked at me and we’re sitting on the couch and we had just done a finger pick and an injection before bed. He was crying and he said, ‘Mom, when am I going to be better?’ And that’s when it really hit me hard,” White Owl said. “I had to tell my son that this was a condition that he would have to live with for the rest of his life.”

Adjustments

Heather White Owl and her husband, Roger, were initially very concerned with how they could balance Anthony’s active lifestyle with the needs that came along with his Type 1 diabetes.

“It was a little bit of a hysteria at first for us to do everything we could to make sure that everything was okay with him,” Roger White Owl said. “We were so unsure. We wanted to make sure he was safe in every way possible.”

Anthony’s parents both have a history of Type 2 diabetes in their families and so were familiar with the dietary restrictions for Type 2 diabetics.

“We kind of went overboard in buying things that were sugar free and sugarless,” Roger White Owl said.

“The Type 1 dietary restrictions are not the same as Type 2. That was a big learning curve for us on what we could and couldn’t or shouldn’t feed him,” Roger White Owl said. “We’ve come a long way.”

When Anthony goes to birthday parties or sleepovers, the first question his parents are asked is always ‘What do we feed him?’

“I say he can eat whatever he wants as long as he puts insulin in for whatever he’s eating,” Heather White Owl said. “We do battle quite a few lows still. So at times he gets tired of eating because he is so active.”

The “lows” Heather White Owl referred to is low blood sugar, also known as hypoglycemia.

“He burns off a lot of those carbs. So we just continuously have to feed him when he’s low. He’ll tell me from time to time, ‘Mom, I don’t want to eat,'” Heather White Owl said.

“As soon as our eyes are open, we’re counting carbs. We are figuring out how many units he is going to need and the pre-planning,” she said.

In addition to food preparation and planning, the White Owls also have to make sure Anthony has adequate medical supplies, such as his Dexcom G7 Continuous Glucose Monitor (CGM), which enables Anthony and his parents to monitor his glucose levels in real-time.

“We have to have a backup Dexcom and then we have to make sure we have extra syringes. We have to make sure we have alcohol pads and lancets and make sure the batteries in our blood glucose meters are functioning. It’s a lot,” Heather White Owl said.

The White Owls have a “going out the door bag” and a “travel bag” full of the necessary equipment and supplies Anthony needs. This preparation makes spontaneity, while still not overly common, a little more attainable in Anthony’s life.

Medical technology

Along with planning and preparation, the medical technology Anthony uses to manage his Type 1 diabetes has also helped streamline his day to day life, ensuring he gets to do all of the things a 10-year-old-boy would typically do.

Anthony has an insulin pump attached to his body that automatically dispenses the insulin so he no longer needs to rely primarily on insulin injections.

“When we were having to do injections, and at the time he was eight, he would cry and he would refuse to eat because he knew if he ate that he’d have to have insulin injected,” Heather White Owl said. “The pump requires a change every two or three days, which really eliminates a lot of those injections.”

“The reason why we chose this is because he’s so active,” Heather White Owl said. “The algorithm on it can predict if he’s going to drop within 30 minutes, when he’s going high, so the pump will know if it needs to give him more insulin or stop his insulin.”

Having an insulin pump doesn’t mean checking glucose levels can be forgotten about however. “Me and my mom, we have this app called eddii, and we can play games on it,” Anthony said.

“Eddii is an app where it tracks his blood glucose levels and it has games for him to keep them in target range. It gives him a little bit more education on being Type 1 too,” Heather White Owl said.

The eddii app also receives real-time glucose readings from Anthony’s Dexcom CGM.

Roger White Owl is especially thankful for the technology because when he’s traveling out of state for work with the tribal government, he can still help monitor Anthony’s glucose readings while on the road.

“The technology allows me to still be a part of that and up to date on what’s happening with our son,” he said.

Anthony’s basketball coach can also check the app and help Anthony stay on track and monitor his levels while he’s active all day at tournaments and such.

“With today’s medicine, Anthony’s thriving,” Heather White Owl said. “He doesn’t allow it to stop him from being him. He actually uses it as motivation to push harder for the things that he wants to do. So we don’t look at it as debilitating. We look at it as a condition that we need to live with.”

An active life

It’s been two years since Anthony’s Type 1 diagnosis and he says it feels normal to him now even if his parents are still adjusting.

“There’s still days where we struggle to accept his body doing whatever it wants to do. Because we’ll ask ourselves, ‘What could we have done?’ When in reality, there’s nothing we could have done. Those days are hard,” Heather White Owl said.

Despite the hard days, Anthony remains a very active 10-year-old, performing traditional indigenous dance as well as playing point guard on his travel ball circuit team, the Weezy Mambas, for basketball. Anthony is a fourth grader but actually plays basketball with the fifth graders because of his skill level.

“He has a passion for playing basketball,” Roger White Owl said. “His skill level is very much ahead of where it should be.”

Anthony is also passionate about indigenous dance and has performed the grass dance at powwows, schools, nursing homes and at the North Dakota State Fair in Minot.

“When he dances, people are in such awe. It really shows what our culture can be and is and he exemplifies that in his dance movements,” Roger White Owl said. “It’s just amazing to watch him dance, how light he is on his feet, the joy on his face when people see him, how he’s on beat and rhythm.”

Anthony has been dancing at powwows since he was 1-year-old and his grandmother made his first set of regalia.

Although Anthony loves the grass dance, he is planning to switch to fancy dance and has been practicing diligently and working hard at it.

“He started asking to change categories right before the pandemic hit,” Heather White Owl said. “Instead of just jumping into it and him not liking it, I said, ‘Son, if you practice for a whole year of fancy dance, we’ll get you your regalia.’ And he’s been practicing for two years.”

“When he puts his mind into something, he excels at it and it’s really amazing to watch,” Roger White Owl said. Fancy dancers are fast and athletic and must keep their time with the beat and account for trick stops.

Anthony is excited to debut his fancy dance and is hoping to enter the category at next year’s State Fair.

“One thing Anthony exemplifies is his tradition of his culture and the strength that it helps bring him mentally to be able to deal with this condition,” Roger White Owl said.