Comedy fundraiser will benefit toddler with Tay-Sachs

When Justin Smolenski of Pingree Grove heard about a 15-month-old boy named Nikko who is suffering from a disease called Tay-Sachs, he knew he wanted to help.

Tay-Sachs has no cure and will likely prove fatal before the curly-haired toddler reaches his fifth birthday, according to his parents, Mindi Fontana and Kyle Zollar of Machesney Park.

On Saturday, Aug. 20, Smolenski, a former comedian, will host a comedy fundraiser called "A Night for Nikko" at 8 p.m. at the Martini Room in Elgin for the family, which includes two-month-old Isaiah, who is healthy.

Popular Chicago-area comics Xavier Lamont - who is set to perform on Comedy Central - Jordan Holmes, Dame Grant and Smolenski are donating their time at no charge to benefit the young family.

"My neighbor is friends with a mutual friend of Nikko's parents," Smolenski explained. "My wife does a workout class with that neighbor. I found that the neighbor did a workout (fundraiser) for this kid. I heard about the situation and, I have four kids myself, and … I can't imagine."

Diagnosis and prognosis

Tay-Sachs babies appear healthy at birth, but within about 6 months, symptoms begin to appear.

"I was thinking maybe my son had autism or some type of learning disability, because he wasn't meeting his milestones," Fontana said.

Issues with Nikko's eyes began to take place.

"We thought he had a lazy eye," Fontana said. "His eye was watering. We took him to the eye doctor. It was a cherry red spot on his eye, which was a first indication of the disease. We researched a bunch and we saw that there were other things out there, so we were hoping that it was something else that wasn't fatal. We had the test done and it came back positive for Tay-Sachs. We had never heard of the disease and none of our family members had been diagnosed."

Development of Tay-Sachs requires both parents to be carriers of the genetic disorder and, as a rule, carriers are usually of Ashkenazi Jews of Eastern European origin. Because both of Nikko's parents are of Irish descent, Fontana was not tested for the disease during her pregnancy.

Once Nikko was diagnosed, the parents began to research the disease and found no comfort in what they discovered.

"It causes (paralysis), blindness, deafness. It is fatal all the time. There are three different kinds, infantile, juvenile, and late onset. Our son has infantile which is the most severe form of it," Fontana said.

"We've tried going to different states, different hospitals, different doctors," Zollar said. "For a long time we were just wracking our brains. 'What do we do?' Mindi is on the phone all day trying to figure out things and see what other parents have done. We're trying to do everything possible."

They found some support from Dr. Chester Whitley and Dr. Jeanine Utzdr at the University of Minnesota.

"We have an amazing doctor who has great knowledge. He does research on the disease," Fontana said. "They had some options for us to slow the progression of the disease.

"We're actually doing some clinical trials with medication," she added. "It's a really expensive medication. It's about $50,000 for 90 days. I fought with my insurance really hard and they agreed to cover it."

Meanwhile Fontana, a former hairdresser, has quit her job in order to spend time with her children.

"She had to take a leave off work because we were told, your son doesn't have time," said Zollar. "So we're trying to put everything from a lifetime for everyone else in a few short years."

The kindness of strangers

As Nikko's parents attempt to cope with the fact that their child will not have the life they had hoped for him, they discovered that a virtual stranger was fundraising on their son's behalf.

"I don't even know the guy that is holding this event," said Fontana. "I never met him. He's been part of a network in Elgin that has been so supportive of my son. We're like 45 minutes away from Elgin, but because of my mommy friends out there, support has come from that way.

"He did a golf tournament a few weeks back and sent us the money from that," she continued. "My friend sent me a picture that he had put up that he was holding an event for a brave young man named Nikko. It made me teary-eyed. I don't even know him."

"My wife says I have a hero complex," Smolenski said. "So I almost felt like I had a responsibility to help. If I see someone on the side of the road, I have to pull over."

This won't be the first time Smolenski has stepped up to raise money for people he didn't know. A year back, he held a fundraiser for a girl who had been in a head-on car accident and also, for victims of the tornado in Washington, Illinois. Both were held at the Martini Room.

"I always like to give back," said Ursula Borodzinska, owner of the Martini Room. "I like to do extra things that will help other people."

Smolenski has no preferences when it comes to the money the fundraiser will obtain.

"Someone asked me what I was raising money for," he said. "Medical expenses? If they want to use it for medical expenses; fine. Want to take the kid to Disney? Fine. Do whatever you want."

He knows that Nikko can't be removed from the finality of the disease, but he feels that, if nothing else, he can remove some of the financial burden on the family.

"I didn't feel like I had to save this kid. I just felt, if there's anything I can do to help this kid, I gotta do it."

"I just want to help my neighbors," Smolenski added. "And in this global community, aren't we all neighbors?"

If you go

What: A Night For Nikko, a comedy fundraiser to benefit the family of Nikko Zollar, a toddler with Tay-Sachs disease

When: 8 p.m. Saturday, Aug. 20

Where: The Martini Room, 161 E. Chicago St., Elgin

Cost: Donations will be collected at the door.

Can't make it? Donations are accepted at the family's Go Fund Me site, <a href="https://www.gofundme.com/lovenicko">www.gofundme.com/lovenicko</a>