Maple Grove Family Raises Awareness About Rare Genetic Disorder
A Maple Grove family wants to spread awareness of mitochondrial disease after losing a baby boy more than four years ago.
For the first nine months, Aiden Koch appeared to be a healthy, happy boy.
“Aiden was born March 30th of 2014, he was our first child,” Briana Koch said.
“All I can remember is his big eyes, big smile, the part that really is unique about him is he’s really laid back,” Nick Koch added.
But Aiden’s health suddenly took a turn.
“Crying all night, uncomfortable, throwing up, throwing his head back,” Briana described.
Shortly after Aiden’s first birthday, he was diagnosed with mitochondrial DNA depletion.
“It was just completely foreign to us and we had a lot of questions about it,” said Briana.
Mitochondrial disease is a genetic disorder that fails to produce enough energy for the body to function. Symptoms can include poor growth, muscle weakness and seizures. Nick said Aiden was the 46th case ever recorded in the world.
“There was no treatment, it was incurable,” the father said.
Only six days after Aiden’s diagnosis, he lost his battle.
“He’s highly impacted us and made us better people and he’s still doing that even now with us,” Briana said.
Energy for Life Walkathon This Saturday
Since losing Aiden, Briana and Nick have been active in helping those affected by the disease. The couple plans to participate in the Energy for Life Walkathon this Saturday in Bloomington.
“It’s not the largest walk ,so it’s more intimate but we want it to be bigger so we know we have more support,” explained Briana.
The event is organized by the United Mitochondrial Disease Foundation (UMDF). It’s aimed to fund research and potential cures.
“The things we would have done with Aiden, these are our moments with him,” Briana said.