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Family finds hope in face of rare disease through 'Jack's Army' foundation

Published: Thursday, July 4, 2013 6:00 a.m. CST • Updated: Tuesday, July 29, 2014 9:57 p.m. CST
Caption
(Photo provided)
Jack Pribaz has a genetic disorder called KCNQ2 that causes epilepsy and slowed development.

Soon after Jack Pribaz was born on March 5, 2009, he began having seizures. He was rushed to the Natal Intensive Care Unit at Central DuPage Hospital in Winfield, but all his tests came back normal.

During the next few years of Jack's life, his parents, Mike – a history teacher and golf and basketball coach at Wheaton North High School – and Liz Pribaz struggled.

The community rallied around the family, they said, organizing a fundraiser for their hospital expenses at Wheaton North the day after Jack was born.

But their firstborn continued seizing dozens of times a day. No one could tell them what was causing the epilepsy or abnormal brain activity.

"We spent the first two-and-a-half years of his life trying to figure out what was wrong with him," Mike said. "We had no direction. We didn't know what to do."

A slew of tests at Laurie's Children's Memorial yielded nothing. The lack of diagnosis meant that the Pribaz family had nothing to put their support behind and no cure to hope for.

Then, a breakthrough. In 2011, Doctors ran a test on a genetic disorder so rare that it was known only by the name of the gene it effects: KCNQ2. Few doctors were even able to identify the disorder, let alone put the Pribaz family in touch with specialists.

After years of helplessness, they were ready to be proactive.

"We talked to neurologists and nobody was telling us it was fatal or can't be cured, so we said 'why don't we start a foundation?'" Mike said.

It was "all talk at first," Mike said, but one of the parents of Mike's JV girls basketball players overheard him talking about Jack after a game.

"If God puts something in front of me that tugs on my heart, he's doing that for a reason," Brian Baird said. "I just felt through the conversation that I had a connection to the idea."

Baird, who is a lawyer, the Pribaz family and another attorney whose daughter was on the basketball team, Eric Pierce, set up the Jack Pribaz Foundation in January 2011. It has raised approximately $125,000 with events such as charity basketball games and a charity golf outing. Magnets, shirts and wristbands sporting "Jack's Army" can be found all around the Wheaton and Winfield area.

The foundation's work has lead to another breakthrough in scientist Dr. Edward Cooper. Cooper was studying KCNQ2 at Baylor University with hopes that his work could help the understanding and treatment of epilepsy. Cooper has since "taken Jack on as his life's work," Liz said, and has received a $2 million federal grant thanks to the progress he made with the assistance of the foundation's funding.

Since beginning their work with the foundation, the Pribaz family has heard from 15 families from around the world whose children also have KCNQ2. They reached out to the Pribaz family for information and support in a way that the Pribazes could not. The Tzorbatzakis family from Montreal was the first to contact them and came to the foundation's first golf outing last year as guests of honor.

"We like bringing families out, because it shows our community that what they're doing is helping more than just us," Mike said. "It's not just Jack – he's the face because he's the first we started with, but he's not more important than the other kids. If Jack gets cured, they get cured."

The Pribaz family is still hopeful for Jack. Liz said he has shown improvement after he was put on a new epilepsy drug called Potiga and began near-daily therapy sessions.

"There are a lot of little things that show he's going the right way," Mike said. "Eye contact, response to our voices, shows emotion. We really feel like he's in there. He can't express it the way other kids do, but you know he kind of gets what's going on around him."

Mike and Liz said they are grateful to represent those affected by the disorder. That opportunity, they said, came because of those who supported them and their foundation.

"We all have challenges, whatever they might be. People still found time to rally around us and help with this," Mike said. "All the support – sometimes you have to find a reason to get up in the morning. And that has kept us going."

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