Lincoln Ogonowski’s mitochondrial disease limits his mobility, so big brother Luke Krumich will often play with Lincoln’s toys for him. “I know what he likes and what he thinks is funny,” Luke said.
Lincoln is 3 years old and has Leigh’s syndrome, a devastating form of mitochondrial disease. Luke, 12, is his protective, loving, awesome older brother. The sons of Dyna and Rob Danger of Freehold, NJ, are as close as brothers can be.
Luke is a sixth-grader at Barkalow Middle School in Freehold. When an opportunity arose at his school to apply for an innovative design program called Spark, he wanted to create something for Lincoln — and all kids who have Mito. Luke’s application outlined his design for a toy that doesn’t require a lot of energy, making it perfect for Mito kids.
During the interview process, Luke talked about Lincoln and about Mito, bringing awareness to the disease. “I told them that it’s hard for Lincoln to use regular toys. He can do this toy on his own.”
Luke was accepted into the program that gives him and seven other kids time during the school year to build their projects at the Glenn A. Miller Center (GAM) Center, a high-tech, tricked-out science, technology, engineering, art and design, and mathematics (STEAM) facility.
Lincoln’s Toy
Lincoln has Leigh’s syndrome, Complex 1 deficiency. He can’t walk or crawl but he can shift himself on the floor. With Lincoln as his inspiration, Luke created his toy design.
“He’s observant of his brother,” Dyna said. “He knows what he likes and what he doesn’t like.”
Luke’s toy design, which doesn’t have a name yet, is a mat that consists of a series of colorful foam squares that boast letters and shapes and contain sensors and noise boxes.
The toy’s colors, artwork, and even the sounds would be customizable for each child. If a child likes certain sounds, music, or voices, those would be programmed into the sensors. Lincoln, for example, is motivated by people’s voices, so voices will be incorporated into his toy.
The child would lie on the mat and roll around to make the different sounds. “Lincoln moves enough that if he’s on the mat, it would work,” Dyna said.
“I burst into tears when Luke told us he wanted to make a toy for kids with Mito,” she continued, noting that Luke didn’t even tell them he had applied for the program until he reached the interview phase of the application.
The night before the interview, Luke asked his parents about Mito and what kinds of things parents would appreciate in a toy. They suggested the toy be safe and easy to clean. “But Luke had already thought of everything before he even talked to us,” Dyna said.
“It’s important to help others,” said Luke, who hopes to have a prototype of his toy done by June. “This project is important because I know Mito is serious and there’s no cure, so I want to make kids happy.”
Special Bond
Luke would do anything for Lincoln. “He’s a regular little brother, a pain in the butt, but really funny and really cute,” he said.
He stumbled when he tried to describe their special bond. “He’s just so … he’s … it’s hard to explain.”
What’s not hard to explain is the love Luke has for his little bro.
“They’re very, very close,” said Dyna. “Luke adores Lincoln. And Lincoln adores Luke. The moment he hears Luke’s voice, he gets so excited.”
Luke helps feed Lincoln, who is 100 percent tube fed. He holds Lincoln while their mom makes dinner. He holds him while they watch Lincoln’s favorite TV shows together.
“He’s absolutely focused on Lincoln,” Dyna continued. “It’s absolutely his world.”
Luke has been involved with Lincoln’s care since he started having issues. “And he’s never complained,” Dyna said.
Luke’s friends view Lincoln as their little brother, too. When they visit, they all hang out with Lincoln and include him in whatever they are doing. Luke and his pals have raised money and awareness for mitochondrial disease.
Luke is a high honors student, a cross-country and track athlete, and CEO of the school’s Business Club store. He plays rec basketball and is the manager for another basketball team. He has a real knack for numbers: For fun, he figures out college and NBA basketball stats.
He also loves to make Lincoln laugh. Luke’s funny voices and noises send Lincoln into fits of laughter. “Seeing him laughs make me happy,” Luke said.
“When I get yelled at, he thinks it’s hilarious,” Luke said, noting he doesn’t actually get yelled at very much. Luke has a little basketball hoop on a door. “[Lincoln] was watching me do that and I ran into the door. He busted a gut laughing.”
Dyna and Rob are very proud of their sons. “Luke is our world-changer,” Dyna said. “And Lincoln is his muse.”