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Tom Smart, Deseret News
Children living with chronic and debilitating rare diseases or their surviving siblings, who will carry a portrait in memory of a loved one, stand with members of the Utah Jazz and the San Antonio Spurs during the national anthem prior to Monday's game. They are wearing lapel pins and wristbands from the National Organization for Rare Disorders in Salt Lake City.

SALT LAKE CITY – 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.”

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.”

Utah Rare was formed to support the National Organization of Rare Disease in its efforts on Rare Disease Day, which began in 2008 as an international event. The group has an event at the Capitol on Friday, where they hope to rally support for several bills aimed at education and funding, and then a Rare Disease Day symposium at the University of Utah on Saturday.

The attention, Might believes, will bring them more than just attention.

“So much more,” she said of what awareness can bring. “The formation of a rare and undiagnosed clinic at the University of Utah and Primary Children’s. We have amazing support from the administrations there, but currently there aren’t funds in place.” Instead of visiting different doctors over days and weeks, and often out of state, patients could see all of the specialists they need on the same day. It wouldn’t just mean faster and more accurate diagnosis, it would mean treatments could address all of the patients' needs, not just a series of symptoms.

“We’re hoping by raising awareness for the needs of a clinic, it will become a reality much sooner,” Might said. “Because right now, children like my son, he had to be diagnosed by Duke University. A lot of our families have to go out of state, even though we have all the capabilities in Utah.”

As the children were ushered off the court and to their seats, one young man turned and gave a high-five to Spurs guard Tony Parker.

“He’s cool,” said Zach Johnson, 11, with a grin. “It was fun. I like watching basketball.”

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