Acountry-western barbecue fundraiser on July 19 will benefit the family of chronically ill 2-year-old Zachary Nemeth of Helmetta.
PHOTOS BY JEFF GRANIT staff Above: Zachary Nemeth, a 2-year-old who was born with multiple disabilities, gets a kiss from his grandmother at the family’s Helmetta home on Sunday. A benefit will be held July 19 in East Brunswick to help with the family’s medical and daily living expenses. Below: Barbara Nemeth holds Zachary as his sister Madison gives him a kiss on the hand. The little boy’s exact medical condition is still a mystery to doctors, according to Zachary’s mother, Barbara Nemeth.
“So far everything has come back negative,” she said. “Right now they don’t have a diagnosis.”
In spite of the negative results, Zachary faces numerous disabilities and developmental delays. He had a few conditions while in utero, such as a clubfoot. But when he was born, doctors also discovered that he had hip dysplasia as well as an inability to handle his own secretions and swallow. To prevent a situation not unlike drowning, doctors opted to put a tracheotomy for now into Zachary’s throat. He also has a feeding tube and uses a ventilator at night. He requires near-constant nursing care.
Zachary now sees a feeding therapist at New Jersey Pediatric Feeding Associates in East Brunswick, and Nemeth said her son is making some progress.
“He swallows, but he doesn’t know he’s supposed to so he fights it,” she said, adding that his progress is jeopardized by the facility not taking Zachary’s insurance.
Nemeth’s daughter Madison, 9, also has a few medical issues. Madison was born with a hole in her heart, has a soft palate problem, and ear infections that have caused her to lose some of her hearing. As such she now is facing surgery.
Doctors, Nemeth said, are uncertain whether there is a genetic link between her children’s conditions.
“They’re kind of perplexed,” she said. Zachary also faces surgeries and an indefinite schedule of treatments and support. Zachary is on his father’s insurance, but it’s quite a challenge to work within the carrier’s parameters, which among other things limit Zachary’s access to nursing care.
“He has a lot of things that are not covered,” said Carol Fisher, who is chairing the July 19 fundraiser at the East Brunswick Elks Lodge. “We would hate for him to lose [access to therapy] because of the expenses.”
“For me, it’s been rough,” Nemeth said, explaining that her son needs specialized care, so few people are equipped to look after Zachary. “Not a lot of people want to jump in to care for a baby with a tracheotomy,” she said.
“I don’t know what I would do,” Fisher said of Nemeth’s plight. “God bless her.”
Nemeth said her son would soon be under the care of doctors at Robert Wood Johnson University Hospital in New Brunswick, where coincidentally she is a nurse. If the doctors there are unable to help, she said she’ll return to Children’sHospital of Philadelphia, which is where Zachary was treated in the past. In addition, Zachary has a hip surgery scheduled for next month.
In spite of all of his challenges, Zachary is tough, his mother said.
“He’s definitely a fighter. He’s starting to be like other 2- year-olds,” Nemeth said.
Zachary also is learning how to sign, making it a little easier for mother and son to communicate.
“He’s so young. He’s fragile. He’s a beautiful baby boy,” said Mirian Guzman, a friend of the family who is also helping to coordinate the fundraiser.
“I call him ‘the miracle boy,’” Fisher said.
But the costs of caring for such a special child are adding up. In addition to the ongoing battles with insurance, Nemeth said the credit card companies are cutting her limits, in spite of the fact that she’s always maintained good credit. “When they shut $25,000 to $10,000, you get into trouble,” Nemeth said.
In fact, Fisher said, the family is at risk of losing access to utilities, and as such has had to notify the electric provider that shutting off power will irrevocably harm Zachary.
To help defray the costs of Zachary’s care, the East Brunswick Elks Lodge will hold a “Get on Track with Zach” country-western barbecue fundraiser from noon to 7 p.m. July 19.
“My parents belong to the Elks,” Nemeth said, adding that her father, John Locklear, was recently named “Elk of the Year.”
“They’re wonderful people,” Guzman said of Nemeth’s family. “I would like to help them.” She is hoping the event will draw about 300 people.
Admission is $30 ($15 for children ages 3-6; free for younger children), and for that, attendees will not only be helping Nemeth and her children, but they’ll also be able to eat, drink and listen to Due South and JT and Friends. The Silver Spurrs duo will offer line dance lessons from 1-2 p.m. The East Brunswick Elks Lodge is located at 21B OakmontAve., off Hardenburg Lane.
The event will be held rain or shine, Fisher said.
To learn more about the fundraiser, visit www.ebelks.com. For tickets, call Fisher at 732- 735-1171. For those who cannot attend but wish to make a donation, checks can be made out to East Brunswick Elks, Care of Carol Fisher, and sent to her at 35 Riva Ave., Milltown, NJ 08850.
“I hope that those who can’t make it can send a donation,” Guzman said. “A donation would be greatly appreciated by the family.”
“I’m humbled by it,” Nemeth said of the family and friends who are rallying around her to help her care for her children. “Everybody is so supportive. I think at first [when learning of the fundraiser] I cried because it’s just nice to know that people think that much of you.”
“Jan and John [Locklear] have always been very helpful” for other causes, Fisher said of Nemeth’s parents. “They never ask for help. But now they’re asking.”