Aiden was a typical, healthy boy for most of his first year of life — and an absolute joy to his parents Nick and Briana.
But a strange sickness crept in around nine months: he stopped crawling, lost strength, threw up daily. He became a different child, his parents say.
Nick and Briana brought their baby to their pediatrician, who sent them to Children’s Minnesota. After many tests and unanswered questions, doctors ran a highly sophisticated genetic test that’s not yet readily available in most hospitals. That test gave them an answer they could never have guessed: Aiden had an extremely rare condition called TK2-related mitochondrial depletion syndrome, which affects the ability of the skeletal muscles to work correctly.
His was the 46th known case in the world. Because it is so rare, not much is known about this form of mitochondrial disease, and there is no cure. Aiden passed away at Children’s on June 20, 2015.
On the hardest days of their lives, Aiden’s family found comfort in their care team. “Those nurses are angels,” remembers Briana. “They cried and were hugging us and helped us through the hard times. One of his nurses came to his funeral. You just don’t expect that from people you’ve only known for three weeks.”
“We still quote those people that we met then — the chaplain, and others — because it was so powerful and meaningful at this time.”
Fortunately, through the growing genomic medicine program at Children’s Minnesota, the family was able to find answers — and hope. They gained the critical information needed to move forward with their family plans, welcoming sons Greyson (in 2016) and Owen (2019). Thanks to testing done at Children’s, their family knows that neither son has inherited the genetic disorder that took Aiden’s life.
Nick and Briana Koch give generously to Children’s in memory of their firstborn son. “We give because we want to help other people have answers,” says Briana. “Even if we can help only one or two families, this is what we need to do.”