Chance encounter forges special bond between Las Vegas family, Middlesex HVAC contractor

When Las Vegas residents Kari Thormodsgaard and her daughter Kara visited New York City, they never expected to see a sign from Rylee 2,400 miles away from their home.

Rylee Thormodsgaard died June 28, 2022 at the age of 24. To mark his "wing-aversary," as his mother and sister call the anniversary of his passing, the two took a trip to New York.

"With their sweet boy on their minds and in their hearts," they were walking on the street when the sight of three men outside having lunch took their breath away.

All three wore navy blue shirts with "RYLEE" in big white block letters on the back.

The shirts − and the men − belonged to the Milltown company, Rylee Mechanical Solutions . But for the Thormodsgaard women, it meant something more.

"You couldn't miss it," said Kari. "We were going to take one of Rylee's memorial cards and take a picture with it at the Statue of Liberty − a memory of celebrating him and just mom and daughter time to reflect. But there were these big, bold letters. It was exactly what our hearts needed. I was like 'Thank you Rylee,' this is amazing."

They took a photo, explained why they were celebrating the life of "Smiley Rylee" and went on their way.

But then they saw another sign on another street when they spotted the "Rylee Mechanical" truck.

"I mean this was New York," Kari said. "The city is so big, but there it was. We came home and we told everyone about it, and everyone agreed that it was amazing − magical."

How did fate conspire to forge a unique bond between a family from Las Vegas and an HVAC contractor from Milltown?

'The happiest, happiest boy'

When she was pregnant, Kari knew Rylee was going to be born with gastroschisis, a life-threatening birth defect. Losing amniotic fluid, Kari was put on bedrest. Born four weeks early, Rylee's weight was fortunately sufficient for the necessary surgery.

After that, Kari thought she had a "typical little boy." But, by the time Rylee was 2, she noticed "things weren't right." He wasn't sitting up and was "trying to crawl weird."

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Rylee was then diagnosed with "an unknown type of leukodystrophy," and not likely to live past his 5th birthday.

Rylee reached 5, then 6. He was thriving and growing, but all his skills − walking, talking − were delayed.

"But he was always happy. He never cried," Kari said.

Nineteen months older than her brother, Kara, at age 17, asked her mother to do genetic testing because she wanted to know if she was a carrier.

A specialist diagnosed Rylee with Salla disease, a genetic nervous system disorder characterized by early physical impairment and intellectual disability. Only 151 people in the world have it, Kari said.

While this diagnosis gave Rylee a longer life, it also explained why he was regressing. According to the specialist, every time a person with Salla disease gets sick, they lose skills.

"I had noticed that with Rylee," she said. "Rylee would get sick and wake up and he forgot how to walk. It was gone. Then Rylee was in a wheelchair. A few months later, Rylee forgot how to chew. I would go to feed him, and he'd make the noise, but he couldn't do it. Rylee got a feeding tube. But still he was the happiest, happiest boy."

In May 2022, Rylee developed respiratory syncytial virus (RSV) and was hospitalized for five weeks. After recovering from the virus, Rylee was left with constant, uncontrollable body tremors. He would go 72 hours without being able to sleep.

And for the first time in his life, he was not happy and not smiling.

"It was torture," Kari said. "This wasn't Rylee. And no one could explain it to me. We were at a loss."

The specialist explained that RSV had "unleashed the beast" to the Salla disease. He offered three treatments and when they failed, this was Rylee's new way of life.

"He could not live like this. It was horrific," Kari said.

Rylee was in hospice for 11 days.

"As sad and as terrible as it was, when he passed, it was almost a comfort. His sister was snuggled up next to him in the bed and I was sitting there holding his hand," Kari said. "When he passed, I knew he was okay. I just had faith. There was sadness. But it was relief that he was free. He'd always been happy and for those six weeks − it was the longest, most torturous time of his life."

A meaningful name for both families

Owned by Ryan, Bill Jr. and William David Sowell Sr., Rylee Mechanical specializes in commercial and industrial HVAC-R service and installation in New Jersey, New York and on Long Island. The family has added Rylee Home Services for residential and light commercial work.

For the Sowell family, Rylee is a coveted name − one that even caused a bit of sibling rivalry between brothers Ryan and Bill Jr.

While the company was named after Ryan − whose full name is Ryan Thomas Lee Sowell − his brother's daughter also is named Rylee.

"There's a bit of controversy there," Ryan Sowell laughed. "Our wives were pregnant at the same time, and I told him I wanted to name our son Rylee. But his daughter was born five days before and he 'stole' the name. He said he did it to honor me, but … anyway, it's become a family name."

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The name became the connection between the family and the business more than 2,000 miles away.

Because it was a holiday tradition for Kari to give Kara a sentimental gift from her brother, she decided to reach out to Rylee Mechanical to buy a company shirt.

"Every time I went to call them, I was a blubbering idiot," Kari said. "I finally managed it and I'm telling him the story, but we didn't exchange information. I was so emotional."

Kari, a hairstylist, told one of her clients April about her failed attempts to contact the Milltown contractor. April took charge and emailed Rylee Mechanical.

The company then responded in a big way, sending a package full of "RYLEE" materials − pens, stickers, shirts, sweatshirts − to April, who delivered it to the Thormodsgaards.

"There was a beautiful letter with such kind, sweet words," Kari said. "They said our story touched their lives. So, I wrote them a letter about what that meant to us. And I got a text back with a picture of my note and the picture of my daughter and I with Rylee's memorial card. It was framed on his office wall. He wrote that Rylee will always be a part of their company. This will always hang on their wall."

The company recently sent another box of goodies with an open invitation to visit.

"They were just so kind," Kari said. "Their company is all those things that Rylee was − so it has double meaning for us. As anyone who has lost someone knows, the grief never goes away. For a company that is more than 2,000 miles away to remember my family who they have never met means more than I could ever describe."

The Thormodsgaards have become family, Ryan Sowell said.

"It's an emotional story for all of us," Ryan Sowell said. "I have to say, when we heard their story in the office, we all cried."

People with disabilities hold a dear place in the hearts of the Sowell family. Ryan Sowell's youngest son is autistic, and his mother worked for more than 25 years as a special education educator in East Brunswick.

"I walk past Rylee's picture and every time, no matter what type of day I'm having, good or rough day, I see him smiling," Ryan Sowell said. "I could never imagine what they went through. I know what it's like with my son, but I can just never imagine her experience. Especially losing a child. But there he is. I see him smiling."

email: cmakin@gannettnj.com

Cheryl Makin is an award-winning features and education reporter for MyCentralJersey.com , part of the USA Today Network. Contact: Cmakin@gannettnj.com or @CherylMakin . To get unlimited access, please subscribe or activate your digital account today.

This article originally appeared on MyCentralJersey.com: Chance encounter forges special bond between Las Vegas family, Middlesex HVAC contractor