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Children with rare diseases enjoy Utah Jazz game

Apr 03, 2017 10:13AM ● Published by Natalie Mollinet

Children with rare and undiagnosed diseases got the chance to stand with the Utah Jazz during the national anthem. (Paul Asay/RUN).

Gallery: Children with rare diseases enjoy Utah Jazz game [4 Images] Click any image to expand.

By Natalie Mollinet | natalie@mycityjournals.com

The Utah Jazz have always worked on community involvement so it’s no surprise when they invited 30 children who have rare and undiagnosed diseases to help them out at their March 3rd game.

 The Brown family of Sugar House has four children, three of whom have rare and undiagnosed diseases. Their 4-year-old son Oliver, who has a rare disease called prune belly syndrome, got the chance to stand with the Jazz as the national anthem was sung.

“Oliver was so excited to be able to go to the Jazz game and spend time with dad,” Melanie Brown, Oliver’s mom said. “He enjoyed doing a ‘normal’ activity.”

Prune belly syndrome is a rare genetic birth defect that affects about 1 in 40,000 births and of those babies, 97 percent are male. The syndrome is a congenital disorder of the urinary system that gets its name from a mass or wrinkled skin that is often present on the abdomen.

“We have met with a couple of families with children with prune belly syndrome through social media,” Brown said. “Social media has been a lifesaver for me trying to connect to others who know what our journey is like.”

Brown’s children also include 7-month-old Rachel, who has a rare disease called imperforate anus and their other son, Christopher, 2, who has an undiagnosed genetic syndrome and an undiagnosed metabolic syndrome.

During the 2014-2015 NBA season, Gina Szajnuk, wife of Justin Zanik, the former assistant GM for the Utah Jazz, approached the Jazz to see if they were interested in honoring children with rare and undiagnosed diseases during a NBA game.

“I had a dream to have 30 kids on the court for the national anthem when I attended my very first NBA Utah Jazz game,” Szajnuk said. “The Miller family and the Utah Jazz organization made my dream come true in 2015, 2016 and now 2017.” Szajnuk has three children of her own who have undiagnosed diseases and she herself has one as well. Since then, five more NBA teams have joined RUN (Rare and Undiagnosed Network) including the Boston Celtics, Denver Nuggets, Milwaukee Bucks, Sacramento Kings and Washington Wizards.

“My dream now is to eventually have all 30 NBA teams honor the rare and undiagnosed community,” Szajnuk said.

“I’m grateful that the Utah Jazz chose to participate and help bring awareness to those with rare or undiagnosed conditions and diseases,” Brown said. “Oliver likes being treated as a regular kid, and what kid doesn’t want to enjoy a Jazz game with their dad?”

Brown said that Oliver doesn’t know that he’s different from other kids. All he knows is that he has a special belly and that he needs to be careful that it doesn’t get hurt. The family hopes to be able to attend the national convention this year in Dallas where they can meet other families who have children with prune belly syndrome.

“I am so grateful that my kids can have these opportunities,” Brown said. “It warms my heart to know that others would donate their time and tickets to allow us to be there.”

For more on RUN, visit rareundiagnosed.org

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