Type 1 Diabetes: Jakob’s story

 

We can all learn a lot from Jason Sudeikis’ iconic character, Ted Lasso. “Be curious, not judgmental.” “Doing the right thing is never the wrong thing.” And of course, “Be a goldfish. You know what the happiest animal on Earth is? A goldfish. You know why? It’s got a 10-second memory.”

But we can also gain some great insight from 17-year-old Jakob and his mom Lisa, who have navigated Type 1 Diabetes (T1D) since Jakob was 5 years old. You can catch Jakob as an extra in the newest season of "Ted Lasso" — he’s the 6’5” teenager doing soccer drills with a continuous glucose monitor (CGM) on the back of his arm.

Jakob has been a patient at the Children’s Mercy Wichita Endocrine and Diabetes Clinic for over 10 years now, and his diabetes doesn’t get in the way of much of anything these days. But navigating the process of his diagnosis and ongoing management hasn't always been easy.

“Just listen to your gut, OK? And on the way down to your gut, check in with your heart. Between those two things, they’ll let you know what’s what.”

It was Thanksgiving week of 2013 when Lisa started to notice some strange symptoms in Jakob. He was exhausted, fiercely thirsty and had wet the bed, which was unusual for the kindergartener. “I called the doctor and said, ‘Something’s not right…I don’t know what it is,’” Lisa recalled.

When Jakob started vomiting uncontrollably at the doctor’s office, they sent them to the nearest children's hospital right away. Unfortunately, “right away” was a more than three-hour ambulance ride to Seattle, Wash., from their home on Whidbey Island, where Lisa served as a Senior Enlisted Advisor at the U.S. Navy Operational Support Center for the Naval Air Station.

The rush to Seattle Children’s and process of getting Jakob’s diagnosis of T1D are something of a blur almost 13 years later. All Jakob can remember is being placed on the stretcher and looking up at the paramedics’ worried faces, and then his mom lying next to him in the hospital bed in her Navy uniform (there was no time to pack a change of clothes).

Lisa remembers feeling absolutely overwhelmed and confused by what was happening. Jakob’s blood sugar, which was so high it was unreadable by the finger stick machines in their doctor’s office, registered well over 1,000 at the hospital. For reference, a normal level would be closer to 100.

Jakob was in diabetic ketoacidosis (DKA), a life-threatening condition where the body can't produce enough insulin to break down sugars and begins to break down fats instead, leading to a buildup of acids called ketones in the blood. “I had no clue what [DKA] meant — I’m just a regular person, I don’t have a medical background, so I didn’t know anything about blood sugars then,” Lisa shared. But now, both she and Jakob have become experts in all things diabetes.

“Taking on a challenge is a lot like riding a horse, isn’t it? If you’re comfortable while you’re doing it, you’re probably doing it wrong.”

Learning to navigate life with diabetes was a bit like drinking from a firehose at first. Lisa took a crash course in caring for kids with T1D while Jakob was an inpatient at Seattle Children’s. However, trying to retain all that information in just a few days was difficult. She studied the binder they provided her and jumped into this new challenge without hesitation.

Once they returned home, Jakob bonded with all the nurses and office staff at his elementary school, who would help him manage his insulin during the day. He also discovered a few other kids in his school had T1D and made it his mission to teach all their classmates about his diabetes. “I would show them how I gave myself insulin with the pen, how I changed my pods and, later on, what a CGM is,” Jakob said.

 

“There’s two buttons I never like to hit, alright? And that’s ‘panic’ and ‘snooze.’”

In the days before CGMs, parents of a child with Type 1 diabetes had the challenging task of waking every few hours during the night to check their child's blood sugar and provide treatment if necessary. After a while, night after night of interrupted sleep followed by 12- to 14-hour days on active duty began to take a toll on Lisa. In 2016, she retired from the Navy after 20 years of service, and the family moved to Wichita, Kan., where she began a new career as a real estate agent.

Jakob's care team in Seattle connected them with Children's Mercy for ongoing care, and that's when they met Fadi Al Muhaisen, MD, affectionately known to his patients as "Dr. Fadi." As the director of the Endocrinology and Diabetes clinic in Wichita, Dr. Fadi has been Jakob's endocrinologist for more than 10 years now. "I like Dr. Fadi a lot," Jakob shared. "He's very famous with the other diabetics! He's a really happy person in general and easy to talk to."

Having specialized care for Jakob's diabetes without having to make the drive to Kansas City for every appointment has been beneficial for their family. "Dr. Fadi is so amazing!" Lisa said. "Jakob has had excellent care here in Wichita."

“I think that if you care about someone and you got a little love in your heart, there ain’t nothing you can’t get through together.”

Dr. Fadi also appreciates the services Children's Mercy provides in the Wichita area, because there is such a great need in the region. "Wichita has a lot of adult medical care, but I feel like here, as a Children's Mercy physician, you can make a great impact as well," he said. "Families travel four, five, even six hours to see us because there are no [pediatric specialists] between Topeka and Colorado for families in central and western Kansas."

The Children's Mercy Wichita Endocrinology and Diabetes clinic cares for more than 800 patients with T1D — that's 30% of all of Children's Mercy patients with diabetes. "Families often feel overwhelmed at the start," Dr. Fadi shared. "We're here for them and provide them with education, reassurance and empathy. We don't want diabetes to define who they are and what they do. It's just one part of their lives that we can help them learn to manage."

“You say impossible, but all I hear is ‘I’m possible.’”

Jakob hopes that his appearance on “Ted Lasso” will help spread that message to other kids with T1D. "I want other kids to know that it gets better with time," he said. "If you're getting diagnosed now, it's ten times easier than back when I was diagnosed. Now we have almost everything you can possibly need [to manage diabetes]!"

Between school, a part-time job, flying lessons, participating in historical reenactments of World War II battles in full costume and creating stop-motion videos and gaming content for his YouTube channel, Jakob is definitely not letting diabetes get in the way of pursuing his dreams. He is looking forward to his senior year and considering Wichita State University for a degree in history as a next step.

And Lisa supports him every step of the way. “I don’t see diabetes as a disability," Lisa said. "I never held Jakob back from anything." From sports to hobbies to appearing on Ted Lasso, "if he wanted to do it, we were doing it," she emphasized.

"I never let him say, ‘Oh I can’t do it because of my pump,’ or whatever. My son might have diabetes, but diabetes doesn’t have us. We got this.”