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Koch family shares emotional genomic program experience

Losing a child is an incredibly devastating experience. And for the Koch family of Maple Grove, it was their first child, Aiden, who died of an extremely rare genetic disorder shortly after his first birthday.

For the first nine months of his life, Aiden was a typical, healthy baby boy. Then his health suddenly began to decline, greatly concerning his parents. He stopped crawling, lost strength in his neck and was no longer happy and thriving.

Aiden’s parents brought him to Children’s Minnesota. After a two-month wait for the genetic test results, Aiden was diagnosed with an extremely rare condition called TK2-related mitochondrial depletion syndrome. This is a condition that, over time, affects the ability of the skeletal muscles to work correctly. There is no cure for this illness, and Aiden’s parents were told he only had months to live. On June 18, 2015, Aiden’s parents, Briana and Nick, experienced a devastating loss when Aiden passed away.

Fortunately, through the genomic medicine program at Children’s Minnesota, the Koch family was able to find answers — and hope. They gained the critical information needed to positively move forward with their family plans. Demonstrating incredible strength, Aiden’s parents have carried on, welcoming Greyson, a healthy boy, on July 19, 2016. They are also continuing to grow their family, with another baby boy expected in September of this year.

The Koch family is very grateful for the support and compassion they received at Children’s Minnesota. To learn more about their story, watch this video.

For those interested in making a financial contribution to Children’s genomic medicine program, visit

Alexandra Rothstein