Stopping By: ‘Diabetes is my superpower’
The McMinnville boy created a custom pair for the 2024 OHSU Doernbecher/Nike fundraising auction, held Oct. 18. The annual event benefits the hospital and its young patients, including Ja’Kai.
His shoes feature removable patches on each side — a lot like the patches Ja’Kai wears on each arm.
The ones on the shoes are merely decorative. The ones on his arms are lifesaving.
Ja’Kai, a fourth-grader at Grandhaven Elementary School, is an outpatient at Doernbecher because he is diabetic.
He was born with Type 1 diabetes. But no one knew he had the autoimmune disease for several years.
As a baby, he underwent four surgeries for a completely different problem: to remove a tumor that interfered with his hearing. He would have been deaf without the operations, said his mother, Heather Gasca. Because of the surgery, he hears well.
Then, when he was 6, Ja’Kai became very sick with multiple symptoms, including weight loss, urinary problems and extreme fatigue. The diagnosis: Type 1 diabetes.
Type 1 diabetes is a lifelong condition in which the pancreas loses the ability to produce a hormone called insulin. Without insulin, a body can’t control its blood sugar levels, which can lead to numerous other serious problems.
The more commonly known Type 2 diabetes, on the other hand, usually develops in older people when the pancreas stops producing enough insulin or the body can no longer use insulin to convert sugars into energy. But like Type 1, unless the condition is controlled through insulin injections and/or diet, the body can suffer from elevated glucose levels and related damage.
To cope with Type 1 diabetes, Ja’kai must constantly monitor his blood, diet and exercise.
He must take insulin if his glucose becomes too high, such as if he eats too many carbohydrates; if his glucose drops, he must drink apple or orange juice or eat some M&Ms or a Kit Kat bar in order to quickly increase his sugar level.
“I’m responsible for monitoring myself,” he said.
Those patches on Ja’Kai’s arms help.
On his right arm he wears a Dexcom patch, which he must change every 10 days. The patch contains a tiny needle that pierces his skin, constantly reading his blood glucose.
On his left arm, an Omnipod patch is prepared to administer insulin as needed. It reacts to the Dexcom readings.
The monitors on his arms helped Ja’Kai become widely known on social media, especially among other young people with Type 1 diabetes.
His first TikTok video to go viral shows him putting on a new Dexcom by himself — the first time he handled the change on his own.
He also participates in online support groups and has made friends with other kids all over the country who share the challenges of their disease.
Ja’Kai celebrated his “diabersary” on Oct. 18, marking three years to the day since he was diagnosed.
Not long after his 6th birthday, July 28, 2021, his mother noticed her youngest son was suffering from constipation, rashes and bleeding in his throat. He’d lost seven pounds from his small frame, and his mother could see his ribs and collarbone.
“I took him to the doctor five times. I yelled at people,” his mother said, ready to shout again if she must to help her son.
Gasca said it didn’t cross her mind that he could be diabetic, although she had worked as a caregiver for seniors, some of whom suffered from Type 2 diabetes. Later, though, it made sense.
“He was dying in front of us,” she said. “I begged for them to do an A1C test (which measures blood sugar averages over three months) and labs.”
Tests of her son’s urine and blood produced shocking results. His glucose level was about 1,000, many times over the 70 to 99 milligrams per deciliter considered normal. His A1C was 15.5, compared to the normal level of below 5.7.
Immediate treatment was needed. But it took a painfully long time to find room for Ja’Kai at OSU, his mother said; no beds were available because of the pandemic and other widespread infections.
Instead, he waited at home, taking long-acting insulin until more specific dosages were prescribed. “It was scary,” Gasca recalled.
“Mom thought I was gonna die,” said Ja’Kai, seemingly unfazed.
“We saved your life,” she told him.
Remembering the period prior to his diagnosis, Ja’Kai said, “I didn’t really feel it.”
But he remembers the feeling of having his glucose tested for the first time. “They poked my finger,” he said.
His mom and his dad, Tavon Taylor, had to administer his insulin. “I was crying. Dad helped keep me still while Mom gave me the shot,” Ja’Kai said.
Gasca said she didn’t like seeing him cry, but it had to be done.
“I was trying to learn how to keep my kid alive,” she said. “I was beyond scared. I cried for a year,” she said.
She and Ja’Kai and other members of the family also learned a whole new way of eating, “a new lifestyle,” she said. They have to figure out what will fit into Ja’Kai’s diet and what might cause him to suffer from wild swings in glucose.
Now Ja’Kai knows how to read nutrition labels, which list the amount of sugars and other carbs per serving, his mom said.
He keeps a supply of acceptable treats in the backpack he carries everywhere. A small refrigerator in his bedroom contains quick snacks, such single-serving applesauce or juice boxes containing four or five carbs each.
And, as the 9-year-old was happy to learn, candy is OK – in moderation, in the right circumstances, with thought. In fact, candy can be necessary if his glucose sinks too low.
If he pays attention, he said, “I can have anything; I just need to take insulin.”
He can do anything, too, his mother said, as long as he monitors and balances his food intake and insulin levels.
“Diabetes is my superpower,” Ja’Kai said.
Initially, Ja’Kai tested his blood sugar with his dad’s diabetic monitor. As the insulin worked its magic, his level dropped with each test – down to 500, then dropping closer to the normal range.
Getting the Dexcom on his arm helped a lot, he said. It monitors his blood every five minutes, so he not only can tell what his level is, but also track how different foods or exercises affect his body.
He’s learned to “read” his glucose level by the way he’s feeling, too. “When it’s low I feel shaky. I’m very emotional, and not strong – I start to weaken up,” he said.
If the level drops below 40, he said, his vision gets blurry and he feels even more shaky. “And I like to eat a lot,” he added.
If his glucose is high, though, he said, “I get angry and grumpy and upset.”
His mother added, “He gets mad!”
With the Omnipod on his left arm, that doesn’t happen often, thankfully, he said.
The Omnipod and the Dexcom are connected to his cell phone. If his blood sugar spikes, his phone emits a high-pitched signal. If glucose drops precipitously, it goes off like a police siren, Ja’Kai said.
With his monitors and awareness of how food and exercise affect him, Ja’Kai is able to play sports for the McMinnvillle Youth Soccer Club and McMinnville Youth Football.
To participate in strenuous exercise, he has to have extra carbs prior to practices or games. His coaches and most of his teammates know about his diabetes, so they understand if he has to take a break or eat a piece of candy.
His teacher and the school nurse also are aware of Ja’Kai’s condition. In fact, he said, his fourth-grade teacher even installed a small refrigerator in her classroom for his emergency juice.
Ja’Kai said he knows his friends and the adults in his life will be proud of his shoe design, which will be available in stores in a few months.
After he was chosen for the Nike/Doernbecher event, he received a kit containing pens, markers and paint with which to decorate images of shoes. He came up with two designs, the blue and black model that became his entry in the auction, and another version with white and orange patterns.
In addition to his diabetic monitors, the chosen design represents Ja’Kai’s interests, including soccer and Fortnite, one of the most popular video games worldwide.
“Ja’Kai 30” is printed on the shoes – his name and the number of his soccer jersey. Lightning bolts streak down the sides, and the shoelaces glow in the dark. The tongues say T1D” — for Type 1 Diabetic.
The shoes color also represents Slurp Juice, a product in Fortnite that increases the health of the player. “Just like insulin increases my health,” Ja’Kai explained.
Ja’Kai is the second Yamhill County youngster chosen for the Nike/Doernbecher show project in two years. Last year Garrett Amerson was one of six Doernbecher patients who designed pairs of shoes. Now an eighth-grader at Yamhill Carlton Intermediate School, Garrett was also featured in the News-Register.
This year, in addition to producing Ja’Kai’s design, Nike treated the McMinnville fourth-grader and six of his friends to a Portland Timbers soccer game. The boys sat in a skybox and were able to order food to be delivered right to them.
“It was a good game,” said Ja’Kai, who dreams of becoming a professional athlete, “but our soccer team scores more goals than they did.”
Contact Starla Pointer at 503-687-1263 or spointer@newsregister.com.
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