What is Type 1 diabetes? Family aims to raise awareness after son's diagnosis
FARMINGTON – Active and happy, Ryker Burns was a delight to his parents, Cassie and Kyle Burns, and was a loving big brother to his baby brother, Axel.
It was a busy time for the Burns family. They had sold a home, purchased a new one and were busy moving into the new home, while doing some remodeling. Baby Axel was settling in and things were hectic. So, when Ryker, who was three years old at the time, began drinking more water than usual, wetting the bed and not gaining much weight, Cassie and Kyle attributed it to the craziness of their lives.
However, when Ryker kept asking for water and was distraught if he spilled any of that water, the couple decided something was wrong.
“He was drinking a gallon of water every day and he kept asking for more,” Cassie said. “When he cried if he didn’t get water, we knew something was very wrong.”
The Burns made an appointment with the doctor who, after doing some tests, told them to take Ryker to the emergency room at San Juan Regional Medical Center immediately. With a medical team waiting for them, Ryker went through more tests. On July 13, 2015, Ryker was diagnosed with Type 1 diabetes and was flown to Presbyterian Medical Center in Albuquerque.
Kyle made that ride with him.
Cassie, with a four-month-old to care for and feeling panicked about her three-year-old, put together things she thought Ryker might need as well as things for a nursing baby, and drove to Albuquerque.
Mom and Dad had to be quick learners
“Kyle stayed with Ryker,” Cassie said, shaking her head at the memory. “He slept in a hospital bed with Ryker and he was very proactive in Ryker’s treatment. That first night was very emotional for us, as we began learning to take care of Ryker right away.”
Ryker’s blood sugar had to be checked regularly, and IVs were inserted to give him needed insulin.
“He felt so terrible, but he was a trouper,” Cassie said of Ryker. “And he didn’t cry, and he was happy until he was ‘poked’ to check on his blood sugar and receive his insulin shots.”
The Burns knew little about Type 1 diabetes, but they were quick learners. Type 1 diabetes in children usually develops quickly, according to the Mayo Clinic website. Signs and symptoms to watch for include increased thirst and frequent urination, extreme hunger, weight loss, fatigue, irritability or behavior changes, fruity-smelling breath, blurred vision and, in girls, yeast infections.
Encouraged and uplifted by Ryker’s positive response to what was happening to him, Cassie and Kyle accepted the health situation their son was in and were determined to make the best of what was a difficult situation.
What is Type 1 diabetes?
Because there is little understanding about Type 1 diabetes, Cassie and Kyle have made it their mission to educate people who are curious about Ryker’s condition.
“Upon the life changing diagnoses, we found out that the general public knew very little of the difference between Type 1 and Type 2 diabetes,” Kyle said. “Many people assume that they are the same, and the diagnoses is a result of poor food choices and large amounts of sugar in the diet. This is not the case for Type 1. Lucky for us, Ryker had always had a healthy diet with limited sugar, so there wasn’t much to change when he was diagnosed.”
“If people care and ask about Ryker, we’re always willing to share and educate them, so they know what it is,” Kyle said. “Type 1 diabetes is an autoimmune disease in which the pancreas does not produce insulin, which is needed to turn the food we eat into energy for the body to use,” Kyle added. “Patients with Type 1 are insulin independent and will stay that way for the rest of their lives. Type 2 diabetes patients have a working pancreas, but the body and the insulin released don’t cooperate with each other. Each type is different and requires different medication.”
Type 1 diabetes diet planning
Ryker is now seven years old and continues to learn more about caring for his diabetes. Duplicating the job of an internal organ is difficult, but ever progressing technology helps. Ryker wears two devices – one that provides a constant reading of his blood glucose, and one that pumps insulin into his system.
He knows what foods have carbs – he likes vegetables, noodles, beef jerky, pretzels and “Mom’s special cookies,” which are made with a sugar alternative.
“Ryker can eat the same way as other people, but he needs to take extra steps and pre-plan,” Cassie said. “We need to count all of the carbohydrates he will be ingesting, then make decisions about the amount of insulin he will need to convert it into energy. “
“As a family, we try to keep to a lower carb diet to prevent his blood sugar from going too high or too low,” Cassie added. “Some ways of achieving that are by using almond or coconut flour in cooking, as well as sugar alternatives that don’t affect blood sugar.”
His diet, though monitored, doesn’t keep Ryker from enjoying snacks.
“I like to eat fruit and carrots,” Ryker said of his favorite foods. “They make you big and strong.”
Comfortable with his condition, Ryker has no issues when people ask about it.
“People will say ‘What’s that on your arm or elbow.’ And I’ll say, ‘It’s for my health’ or ‘it’s a pod or sensor’,” he said.
“And when my pod goes off (signifying an issue with his blood glucose numbers), they (his classmates and teacher) know it’s not the fire alarm,” he added with a big grin.
Managing Type 1 diabetes is a group effort
The challenges of having a child with type 1 diabetes go beyond the food he eats and the things he does, Kyle said.
“Type 1 is a 24/7 disease that requires constant tweaking and decision making,” said Kyle. “But we try to find a balance that teaches him to manage his diabetes, and still be a normal kid,” he explained. “When we left the hospital, we decided we didn’t want his diabetes to slow him down and not let it determine what he did and didn’t do.”
But it’s not just Mom and Dad who must watch and monitor his sugar and carbohydrates. Ryker’s grandparents also share in his treatment.
Vicki Burns Thille is Ryker’s grandmother and Kyle’s mother. Living in Farmington, Thille has the opportunity to enjoy Ryker and Axel often. Watching the boys play – whether it’s outside or inside – is as fun for Thille as it is for the boys. Watching Ryker’s numbers, however, is always of some concern, Thille said.
“Ryker’s device has to be within 20 feet of him, or it will disconnect,” Thille explained. “And if his numbers go down too low or too high, I get a phone call from Cassie.”
Cassie and Kyle both have apps on their phones, which let them read Ryker’s numbers from wherever they are, Thille added.
There was an instance, however, when Ryker left his device in the car when he and Axel went shopping with Thille.
“His numbers dropped, and I couldn’t get ahold of Cassie,” Thille said. “I had one piece of candy and I gave it to him. Now, I keep candy with me all the time!”
“Ryker’s got it down,” Thille added. “He monitors his numbers and usually he can tell when they’re down. Ryker is what I refer to as an ‘old soul.’ He is much wiser than any seven-year-old should be and he has adapted to his life.”
“Diabetes will never be an excuse,” Thille continued. “It will only make him stronger.”
'He can do anything other kids can do'
Cassie’s parents, Kim and Bryan Turgesen, are also close to their grandsons and marvel at how well Ryker has handled his health issues.
“Cassie and Kyle have always talked very ‘adult like’ to Ryker, even as a baby,” the Turgesens said. “So, when he was diagnosed, they just continued educating him about Type 1 in that same way – explaining it all in ways he could understand and giving him control over what little he had control over.”
“It has been amazing,” the Turgesens added, “to see how they have helped him to be so knowledgeable about Type 1. As a family, they have always had a ‘we can do this’ attitude and a dedication to helping him have as normal life as anyone. He can do anything other kids can do; he just needs to take extra steps at times.”
But it is Ryker himself who has taken on the responsibilities of his health.
“Ryker has to be more responsible than a normal seven-year-old,” Cassie said. “He has to know more about his own body than the average seven-year-old.”
While his friends might not totally understand Ryker’s devices and his diet, there is one child who “gets” Ryker’s condition, understands it, and accepts it. In spite of the need to monitor Ryker and make sure his levels are where they need to be, Ryker’s shadow, his brother, Axel, 4, may very well be his biggest supporter.
“One day, Axel said he wished he could have diabetes, too, so he could be just like his brother,” Cassie said. “He has idolized his brother since day one.”
“I love him and he’s my very best brother,” Axel said of Ryker. “He’s really a friend and we play a lot of dodgeball, power rangers and baseball.”
The boys have a close relationship and are protective of one another, Cassie said.
“Ryker takes care of Axel and Axel eats what Ryker eats. If Ryker has to wait a while before eating a snack, Axel does too,” Cassie said of her boys. “And because of what he has been through, Ryker is very aware of the feelings of others. He wants to be independent, and he always wants to help others.”
While he is only in the second grade now, Cassie and Kyle look to what Ryker’s future might be.
“We have some control over his health now, but we worry about different stages in his life,” Cassie said. “Eventually, he’ll have to take care of himself, counting his carbs and knowing that half an apple is 10 carbs, that kind of thing. We worry how he will be in middle school – will he still be responsible about his health? When he goes to college, will he continue to monitor his blood sugar and control it?”
“We will always attempt to keep an open mind and keep the lines of communication open,” Kyle said.
If his parents are concerned about his health as an adult, Ryker’s biggest concern about his future is whether or not he’ll be a zookeeper.
“I think that’s what I want to be. I like zoos and I think they’re pretty cool,” Ryker said. “And my friend might do it, too, and we’ve been friends since we were in pre-school.”
The last four years have offered challenges and opportunities for Cassie and Kyle Burns. They’ve learned how to deal with a child who has Type 1 diabetes, they’ve been through the challenges and opportunities and they’re willing to share their knowledge with others.
“Type 1 diabetes isn’t a ‘one size fits all’ disease,” Kyle said. “Every kid is different, but there are common grounds as well.”
Education is critical in dealing with diabetes, Cassie and Kyle said. “Anybody new to it (Type 1 diabetes) and trying to deal with it can use the support in goals and education,” Kyle said.
Keeping positive is also important, Cassie and Kyle said.
“When we were released from the hospital, Kyle made it a point to carry on as normal as possible,” Cassie said. “When Kyle went back to work, I had an ‘oh, my gosh’ moment. What do we do now?’ But we have tried to carry that same attitude of positivity we left the hospital with. We don’t ever want Ryker to see his diabetes as a hindrance to his life. We know he will go on to do amazing things.”