Date: January 5, 2006
Section: Neighbor
Edition: C6,C5,C9,C10
Page: 1
Column: Local beat
Community responds in big way to story of little boy
Sheila Ahern

Despite 4-year-old Tony Tzoubris feeling a little under the weather this holiday season, it was a good one for him and his family. That's because the community responded in a big way to his family's mission to raise money to cure little Tony's disease, one of the rarest in the world.

In late November, I wrote an article on Tony's ongoing battle with opsoclonus-myoclonus syndrome, or OMS. It is named for the darting eyes and muscle twitches that are hallmarks of the disease, which is also called dancing-eyes-dancing-feet syndrome.

There is no known cause or cure for the disease, which is also listed with the National Organization of Rare Diseases.

So Tony's parents - Tony and Patti - set out to find a cure for OMS themselves, one dollar at a time. Even though little Tony's treatment costs about $100,000 per year, they're not raising money for themselves. They're raising money for research. They're raising money for a cure.

Before I talked to Tony and his family, another person joined in the family's quest to raise money. Tony's teacher, Nicki Koch, organized a silent auction in Tony's honor in November at Greenbrier Elementary School in Arlington Heights.

Before the auction, Tony and Patti had already raised $220,000 between overseeing little Tony's 24-hour care and raising two other children: Lia, 6, and Sam, 2.

The silent auction raised $6,100, but that was only the beginning. Residents from all over sent Tony's family checks totaling another $6,000, said Tony's father. The Arlington Heights Police Department chipped in another $1,100.
"It was just so heart-warming," Tony's father said this week. "People sent in money from all over. We couldn't believe it."

The most widely accepted OMS theory is the auto-immune theory. The brain is an innocent bystander caught in the "crossfire" between the body's immune system and a tumor or virus, which it is trying to destroy. Brain regions like the cerebellum, brainstem and limbic system bear the brunt of the onslaught, according to Dr. Michael Pranzatelli of Southern Illinois University in Springfield.

Pranzatelli is Tony's doctor and heads the largest pediatric OMS center in North America. He is treating 120 children from all over the world.

For Tony, it all started on July 8, 2003, when he was 20 months old. He was eating breakfast with his family and between bites of cereal, Patti noticed a slight tremor in Tony's right hand.

Several hours later, the entire right side of Tony's body was shaking, so his parents took him to Children's Memorial Hospital in Chicago. After a battery of tests all came back negative, the doctors told Tony and Patti that little Tony had a post-viral infection and would improve within weeks.
But a few days later, tremors took over the rest of Tony's body. His parents helplessly watched as he lost the ability to walk or crawl and eventually everything - even control of his eyes, which darted back and forth uncontrollably. During Tony's next trip to the hospital, he was diagnosed with OMS.

OMS children often experience brain damage that causes permanent neurological problems and a significant IQ drop. The tremors could also follow Tony for the rest of this life.

Tony must also take daily hormone injections that caused his tiny frame to gain 15 pounds in a few weeks. OMS also causes speech problems that makes Tony self-conscious.
But little Tony isn't giving up.
Neither are is parents.

They keep getting more donations every day. This week, Patti Tzoubris received another $500 donation. Lia's old preschool is talking about hosting another fundraiser. So are some of Patti's old high school friends, as well as friends of Patti's sister in New York.

Patti and Tony are also talking to Chicago Bears representatives about yet another fund-raiser.