SALT LAKE CITY, Deseret News,  – Jaxen Frisk clutched the arms of his younger siblings as they made their way onto the basketball court at EnergySolutions Arena.

The 9-year-old didn’t recognize the Spurs player they stood in front of during the national anthem, but that didn’t matter to the soft-spoken smiling boy.

“I couldn’t see him,” said Frisk, who was one of about three-dozen children with rare or undiagnosed disorders and diseases attending Monday’s Jazz game with Utah Rare, an umbrella organization for groups dedicated to education and support for families dealing with rare diseases and disorders. “He was so tall. I liked it. It was cool.”

His mom, Jenny Frisk, said it was a thrill not only to see her children at center court with basketball stars, but also just to be at an NBA game.

“I could tell they were super excited,” Frisk said. “It was something they’ve never gotten to do, and probably won’t ever get to do again. So it was really memorable.”

utah rare disease day activities with the Utah Jazz

Children living with chronic and debilitating rare diseases stand with members of the Utah Jazz and the San Antonio Spurs during the national anthem prior to the game. They are wearing lapel pins and wristbands from the National Organization for Rare Disorders Monday, Feb. 23, 2015, in Salt Lake City. They sttod with surviving siblings and carried portraits in memory of loved ones lost to rare diseases.

What’s even more memorable, however, is a night out with her family that they’ve never before experienced.

“It’s exciting because it’s a safe structured environment,” she said. “Normally we can’t go to things like this because we can’t bring our own food, they can’t eat anything or they’re mostly tube fed. And then there is the cost. We spend so much money on our medical expenses that we usually don’t have extra money to do fun stuff like this. So it’s really great to come out with Utah Rare and do something fun.”

The evening was made possible thanks to the organizational skills of Gina Szjanuk, wife of Justin Zanik, the assistant general manager for the Utah Jazz. Their three children, Ava, Oskar and Lucy, suffer from an undiagnosed genetic dysfunction and Gina is involved with the efforts of Utah Rare in celebrating Rare Disease Day, which is this Saturday, Feb. 28.

She was emotional as she talked about what it meant for her to find a way for 30 children who live with chronic, debilitating and sometimes deadly disease to attend a Jazz game Monday night.

“We really wanted to reward people who worked really hard,” Szjanuk said. “We wanted to raise awareness for Utah Rare, but also give these kids the gift of the Jazz. … These kids deserve the fun of a Jazz game.”

She knows the joy the games bring to the lives of her own children and she’s shared that with some families, including Cristina and Matthew Might and their son, Bertrand. Szjanuk brought the 7-year-old to a recent Jazz game for his birthday, and he was hooked.

“He’s on cloud nine, as you can see,” Cristina Might said glancing at her son, who sat near a wall in the underbelly of the arena. Wearing a green Jazz cap and a blue T-shirt, he was strapped into a wheelchair but wiggling almost constantly with anticipation. “He loves the lights and the sound. This is really his element.”

Bertrand seemed normal at birth, but when his development slowed, his parents searched for answers. Just two and a half years ago, he became the first person in the world diagnosed with N-glycanase deficiency (NGLY1.org).

“He had a two-year life expectancy,” Cristina said smiling at him.

She said Monday’s game was a nice break for families, but it was also an opportunity to bring attention to diseases that are easy to overlook.

“One of the things we’d like to bring attention to is that one in 10 people are affected,” Might said. “That’s 290,000 people in our state who are affected by rare disease.”

Deseret News
Tom Smart

 

About 30 children affiliated with Utah Rare (Utahrare.org) attended Monday’s Jazz game with their families. They stood with players from both teams during the national anthem before watching the game with their parents. Utah Rare is excited to do this again as part of the 2016 Rare Disease Day activities

 

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