There’s a new sheriff in town, and he’s 4 years old

EVERETT — Isaiah Kobernik had two requests for his day as sheriff.

First, he wanted a Coca-Cola. Second, he asked his fellow Snohomish County sheriff’s deputies to do five jumping jacks.

“He actually wanted them to do 10 jumping jacks, but we talked him down,” his mom, Anastassia Kobernik, said.

Isaiah, 4, was sworn in by Sheriff Ty Trenary as Chief for a Day on Wednesday at the Snohomish County Courthouse. The program is dedicated to children who have life-threatening illnesses. Isaiah has spinal muscular atrophy, which affects muscle growth and can make basic functions difficult, such as walking, breathing and swallowing.

Cheers filled the room after Isaiah took his oath. The boy broke into a big smile. His dad, Gerad Kobernik, pinned the badge onto Isaiah’s uniform.

Isaiah was also celebrating his birthday. He turned 4 last week, which is something his parents never expected. He had a 10 percent chance of making it to age 2. The family lives in Monroe.

The sheriff’s office provided a one-layer red, yellow and blue cake. They set out a table full of gifts, and pinned banners to the walls. Isaiah’s sister and two brothers got presents, too.

After Isaiah unwrapped all his new toys, the group went outside to explore a bomb squad truck and watch a remote-controlled robot pick up and squish orange traffic cones. Isaiah’s older brother, Judah, was playing with a microphone inside the rig. His laugh came over the loud speaker as he called to his mom.

This wasn’t Isaiah’s only fun as chief.

Last week, he visited a police dog and its handler. Next month, he gets to ride with his dad through Everett’s Fourth of July parade. In August, he and children from other law enforcement agencies get to play at a carnival in their honor at the Washington State Criminal Justice Training Commission in Burien.

Anastassia hadn’t expected the department to do so much.

“He’s going to talk about this forever, and for years to come show everybody his pictures. He’ll never ever forget,” she said.

The whole family was included. Isaiah’s grandparents and cousins came to watch the ceremony. His parents and siblings wore dark green T-shirts with their last name on the back.

They watch out for each other, Anastassia said.

Isaiah’s brother Judah, 8, has had his own set of challenges. He’s nearly blind. Judah has shown Isaiah how to get through it all.

“He’s kind of paved the way for his brother,” Anastassia said.

Their other brother Ezekiel, 6, and sister London, 16, help take care of the boys. Sometimes it can be hard, but they always want to help, Anastassia said.

In return, Isaiah loves telling them jokes and making them laugh. He thinks of his siblings when he gets a treat with his mom, and asks her to bring home three more.

“(He) doesn’t ever complain about his lot in life,” she said. “He doesn’t like to get poked with needles and go through all these physical exams, but he never once complains about having (Spinal Muscular Atrophy). He never complains that he’s in a chair and can’t walk.”

There was no cure for the disease when Isaiah was born. His parents tried getting into clinical trials. There were precious few spots and strict guidelines. In one case, Isaiah was two weeks too old.

Anastassia and Gerad considered moving the family to another state, where testing might have been easier to come by.

“It was kind of like a lottery, like winning the lottery to get into the trial,” Anastassia said. “Families are just fighting tooth and nail to get in.”

Then, Seattle Children’s Hospital began accepting patients to try a medicine called Spinraza.

Isaiah met all the requirements. He and one other child in Washington were chosen.

There was still one-third of a chance the drugs wouldn’t work.

“We took it, because it was all or nothing. You can sit home and watch him deteriorate, or we can put him in a trial and hope for the best,” Anastassia said.

Isaiah started to take the medicine when he was 15 months old, and is treated every four months. He’s sedated before the procedure, which is an injection into the spine.

He’s had to go in 12 times so far. Each shot costs $125,000, although the hospital covers it.

Isaiah has five more years of trial, but will use the medicine for the rest of his life, Anastassia said. Spinraza was approved as a treatment for Spinal Muscular Atrophy in December 2016.

It’s working for Isaiah.

He’s building muscle. He’s strong enough now to breathe, swallow and speak on his own.

And raise his right hand to take an oath as sheriff.

Stephanie Davey: 425-339-3192; sdavey @heraldnet.com. Twitter: @stephrdavey.