Date: November 20, 2005
Section: News
Edition: All
Page: 9
One little boy's four years of joy and pain
Sheila Ahern Daily Herald Staff Writer

Tony Tzoubris' huge smile pushes up cheeks made chubby by hormone shots his dad gives him every day.

Not that the 4-year-old holds a grudge. When he gets the chance, Tony climbs on his dad's lap, wraps a chubby arm around his neck and listens to his mom, Patti, and sister, Lia, chat in their Arlington Heights home.
And he smiles.

His smile lets his family know he's OK - that for now, he's forgotten about needles and hospital visits that last hours. Tony's family looks for his smile because most of the time, even they can't understand what he's saying.

OMS: No cause, cure
Tony Tzoubris has one of the rarest diseases in the world, called 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.

About 80 children are diagnosed with the disease each year worldwide. Because it is so rare, both funding and help are scarce. Support groups are nothing more than an Internet e-mail click. Insurance companies don't cover experimental medicine or treatments - which, for Tony, is just about everything.

So Tony's parents - Tony and Patti - are hoping 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.
"We can't just sit here and watch him deteriorate," his father said. "You know how they say it takes a community to raise a child? Well it does, and that's what we need."

So far, they've raised $220,000 between overseeing Tony's 24- hour care and raising two other children: Lia, 6, and Sam, 2.

"We'll be able to tell Tony we did everything we could," Patti said. When it comes to rare diseases, "everything" is money. And Patti and Tony want to raise a whole lot of it - $1 million.

How it started
OMS children go from happy toddlers to screaming children with tremors that take over their entire bodies. Most are unable to walk, crawl, roll over or even swallow before being diagnosed.

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 OMC 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. 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.
"I remember the doctor told us it was like the lottery of diseases," Patti said. "It's that rare."

Then came the spinal taps - six of them - along with eight CAT scans and two rounds of chemotherapy.

"Everything a parent would never want to do to their child is what we've had to do," Tony said.

Patti nods alongside her husband. "Tony just accepts it," she said. "They put in an IV, and he doesn't even blink. He's had treatments that last seven hours."

It's also hard for Tony's siblings.
"This kind of thing affects the whole family," Patti said. "Lia could write her own story."

Tony's future
Tony's parents don't know if he'll ever be able to live independently or hold a job. They don't know if he'll have learning disabilities or mental retardation.
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.

They do know relapses will be likely. Relapses that bring back the full-body tremors. Doctors will not give Tony and Patti a prognosis.

"Tony could wake up one morning and not be able to walk," Patti said.
To prevent relapses, Tony and Patti have had to shield Tony from germs most of his life. They can go to the bookmobile, but not the public library. Trips to the park and even grocery store are out.

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, Patti said.

Despite all of the problems, Tony's very much like normal 4- year-olds.

When Patti brings it up, Tony nods about his Scooby Doo Halloween costume or a birthday helium balloon that got away. For the first time in his life, Tony is in school, taking special classes at Greenbriar Elementary School.

Tony's smile also touched his teacher, Nicki Koch, who organized a silent auction in Tony's honor that will take place during parent-teacher conferences Tuesday at Greenbrier Elementary School in Arlington Heights. "His personality and his smile - he's just a great kid," Koch said. Tony was supposed to attend school last year but was too sick and was home-schooled.
"This is really the first time Tony has ever been away from the parents, and he's doing great," Koch said. 'You'd never know'

Tony doesn't know a life that didn't include needles, spinal taps, chemotherapy, nuclear scans and painful treatments. But maybe someday, thanks to his parents, he will. Until then, he smiles. Because when you're 4, you can leave memories of needles at the hospital. At home, there's television to watch with Lia, and little Sam is up from his nap, toddling around and just begging for a loving poke from his older brother.

"Looking at him. You would never know how sick he was," Patti says as she smiles at Tony drawing a picture. "You'd never know how sick he could be." When Patti mentions his name, Tony pauses his doodling and looks up. And he smiles.

OMS at a glance
- Opsoclonus-myoclonus syndrome - or OMS - is a rare neurological disorder that usually affects infants and young children. It is characterized by the sudden onset of brief, repeated, shocklike spasms of muscles within the arms, legs or entire body; an impaired ability to control voluntary movements; and continual, involuntary, rapid eye movements.
- Its cause is unknown. About half of those who are afflicted also have a neuroblastoma, a rare, cancerous tumor. It is thought that the antibodies designed to fight off the tumor somehow also end up attacking the brain. The other half of OMS patients apparently have no neuroblastoma. In those cases, doctors think the disease might be caused by a virus, a known cause of other brain abnormalities.
- Behavior problems and brain damage are common outcomes in OMS patients, even in those who respond favorably to treatment and, in very rare cases, later show no signs of the disease.
- OMS is registered with National Organization for Rare Disorders. Fewer than 80 children in the world are diagnosed with OMS per year.
Source: the National Organization for Rare Disorders and The National Pediatric Myoclonus Center
Tony Tzoubris' family - clockwise from left, Tony, 4-year- old Tony, Patti, Sam and Lia - is trying to raise $1 million for opsoclonus-myoclonus syndrome, or OMS, research. Tony Tzoubris received his diagnosis of the rare disease more than two years ago, when he was 20 months old. Paul Beaty/Daily Herald An additional photograph accompanied this article, however the caption information was not available.