(KMSP) - A Minnesota couple is sharing their son’s story to raise awareness for mitochondrial disease, which prevents energy producers in the body from working properly.
Born in late March of 2014, Aiden James Koch was happy and healthy for his first nine months.
“He made us parents for the first time,” said Briana Koch, Aiden’s mom. “It was beautiful, like any parents can experience.”
After the holidays that year, life for Aiden and his parents changed.
“We had some hope,” said Briana. “We also had to make really hard decisions as parents of a child that are completely unnatural.”
For months, doctors struggled to find the right diagnosis as Aiden's strength deteriorated. Eventually, he was no longer crawling, and his neck was too weak to hold up his head to safely eat.
Aiden was finally diagnosed with mitochondrial DNA depletion syndrome, a form of the rare disease that can be inherited or impact people at any age when a gene mutates.
Mitochondrial DNA depletion syndrome is too often deadly for children and is said to be approaching the same frequency numbers as those fighting childhood cancers. According the United Mitochondrial Disease Foundation between 1,000 and 4,000 children nationwide are diagnosed each year with mitochondrial disease. Mitochondria serve as the body’s energy producers. When those energy producers don’t work properly, a whole host of problems follow.
“So Aiden produced energy at about 10 percent of what a normal child or individual would,” said Nick Koch, Aiden’s dad.
Less than three months after his first birthday, Aiden's parents were forced to say good bye.
“When we found out his diagnosis, we knew it was terminal,” Nick said. “We thought we had months, instead we had days.”
The couple later found out Briana is the carrier of the affected gene, while Nick’s gene had unknown significance. The Kochs have a 25 percent chance of mitochondrial disease impacting any children they conceive.
“We also have a 75 percent chance it won’t,” Briana said.
The Kochs had a second son, Grayson, two years ago and testing confirms he is free of the disease. But, they won't stop bringing awareness and raising funds for research until there's a cure.
“This is life,” Briana said. “Life goes on; we have to continue.”
On Saturday, the Kochs will be the grand marshals for the 9th annual Energy for Life Walkathon, which raises funds for the United Mitochondrial Disease Foundation.
Registration will start at 8:45 a.m. The opening ceremony will start at 10 a.m. and the walk begins at 10:30 a.m. Fox 9’s Leah Beno will be the emcee.
To register or donate, click here.