Club, community rallies around toddler with rare genetic disorder

Published May 14, 2017 at 9:00am

Since literally the moment he was born, 2-year-old Dominic Tebo has been fighting for his life.

The toddler was born at 38 weeks with a rare genetic disorder called MAG-2 genetic mutation. He is one of five people in the world diagnosed with the condition, and is also the youngest.

“He was actually born dead and they had to resuscitate him,” said the child’s mother, Monica Moffo. Dominic “spent the first six months of his life in the Neonatal Intensive Care Unit at Crouse Hospital in Syracuse. He had to have a tracheotomy after two months.”

Dominic was born on Dec. 7, 2014, and less than two months later, on Feb. 3, had to undergo tongue reduction surgery, the mother said. On Feb. 13, Dominic had to have a feeding tube.

The child was born with Tracheomalacia, meaning he had a weak, or flopping wind pipe that blocked his airway. Despite all his battles, Dominic is still a strong, happy and energetic 2-year-old.

“He is the youngest to have the MAG-2 genetic mutation, and the only one on this side of the states,” the mother explained. “Little to nothing is known about it. Dominic was born with all his chromosomes, but on one chromosome, there’s like 1,000 different letters, but that one chromosome is missing one letter.”

Moffo said she and Dominic’s father have a 1 percent chance of having another child with the genetic disorder, but Dominic would have a 75 percent chance.

Dominic has required several corrective surgeries, medical procedures and constant treatments since he was 2-months-old. He will need constant doctor’s visits and little is known of what lies ahead, medically, for the toddler.

On behalf of the Tebo family, Lake Delta Kiwanis is hosting a fund-raiser to raise enough funds for them to buy a new home that can meet Dominic’s current and future medical needs. It will be held from noon to 5 p.m. Sunday, May 21 at Lee Center Fire Hall, 5510 School St. in Lee Center.

In addition to featuring a chicken barbecue, the event will include live music, a 50/50 raffle, basket raffle, face painting and other activities. Cost is $10 per ticket.

“Our motto is children are priority one. When Dominic’s grandmother, Tricia, told us the story and situation of her grandson, we wanted to help,” said Duane C. Niemi, Kiwanis life member and Kaiser Fellow. “We’ve done these benefits before to help families out, and one of our new members, Meghan Heyes, took it on and just went off from there.”

Niemi said several companies have made donations either toward the event or Tebo family. He recalled a situation a number of years ago involving a young boy in Frankfort, Herkimer County, who had a similar medication situation. Kiwanis banded together to raise money to renovate the boy’s room so that it could accommodate all his medical equipment. The effort was known as Isaac’s Room.

As for Dominic’s benefit, “This is one of those things I think any group would do, but we were in the right place at the right time,” Niemi said. “This is an example of good people helping a family in need — the idea of people helping people. If someone can feel good by helping someone, that’s a really good feeling.”

“We’re really looking forward to this event,” he said. “We heard a lot of people are coming up for this, and we have people who continue to donate.”

Moffo said Dominic was chosen out of 100 children by the Kiwanis to head the event, which has grown beyond the Kiwanis and has become a community-wide effort.

“People coming out and showing their support has reached from Camden to Waterville,” she said.

Right now Dominic is chair bound and must have a 3-foot tube and other wires extending from his ventilator, which he must remain hooked up to at night, mom Monica said.

The toddler also needs a walker to get around.

Anytime the family goes out, “We have to take everything with us as if he will need it,” Moffo said.

As for their current home, “Dominic can’t take a shower with his tracheotomy, and we don’t have a bathtub,” the mother said. “I want him to never have to worry for something to be his. If we end up buying a house with the money raised, then it’s his.”

Those who cannot attend the May 21 benefit but would like to help out the Tebo family, may send donations to Berkshire Bank. A savings account has been opened by the family under Dominic Tebo. Any checks donated should have “Dollars for Dominic” written in the memo line.