Aiden James Koch was born on March 30, 2014, at a healthy 8 lb 10 oz in Maple Grove, MN. His big beautiful blue eyes and ear-to-ear smile would light up any room.

Aiden was a typical, healthy baby for the first 8 months of life. Our family had many amazing experiences such as his first boat ride at the cabin, the many trips to the zoo with mom or dad playing Santa at his first Christmas.

Aiden was also doing those things that all kids start to develop like sitting, crawling and pulling himself up.

In early January 2015 Aiden started experiencing various illnesses. First a cold, followed by an ear infection, then followed by strep throat. We first thought these were all the small things we were told Aiden would experience in his first two winters living in Minnesota.

The first major red flags started in mid-February 2015 with symptoms such as severe vomiting and the loss of motor skills such as crawling and pulling himself up.

Our primary pediatrician referred Aiden to a neurologist in March 2015 due to his continued loss of muscle and overall loss of health. This started our journey of neurologist visits, metabolic specialty care visits, bloodwork and emergency room trips.

Through all of the testing, we discovered that Aiden had an elevated CK Enzyme level, which is attributed to muscle breakdown, and an elevated Lactate Acid level, which is usually associated with various metabolic conditions. Aiden was seeing specialty doctors and both Children’s Hospital- Minneapolis and Gillette Children’s Hospital- St. Paul. After 2 or 3 months of testing, these amazing doctors determined a working diagnosis of Mitochondrial Myopathy.

During this 2 to 3 month period Aiden’s muscle strength continued to worsen such that he could no longer sit, hold his head up for long periods of time, and struggled to swallow food. Because of this, our family made the difficult decision to proceed with the feeding tube surgery recommend by our large team of doctors. The goal of the surgery was to supplement his body with nutrient rich food that he desperately needed to thrive and recover.

Aiden’s successful feeding tube surgery was June 11, 2015. On June 12, 2015, we received the devastating news that the metabolic blood testing, which take a painful 8 to 10 weeks to complete, came back and confirmed Aiden had a disease called Mitochondrial DNA Depletion Syndrome. Aiden was the 46th case recorded, ever, in the world. With no cure, the doctors estimated Aiden had 3-5 months with us, and our attention turned to keeping his respiratory system as healthy as possible.

Aiden vomited the night of June 16, 2015. Some of this vomit aspirated into his lungs. This aspiration then led to pneumonia and respiratory failure which took his life on June 18, 2015, just 7 days after the official diagnosis we were desperately searching for over the previous 6 months.

Throughout this experience we have learned the challenges of diagnosing and battling Mitochondrial Diseases. We have also been able to experience the incredible support that Children’s Hospitals provided and are forever grateful for those individuals that had a part in care for Aiden over those months.

At 14 months old Aiden was the strongest, most loving and most selfless person our family will ever know. His beautiful smile, his golden heart and selfless love will be with us forever.

Our family will forever be grateful for each day we had with Aiden.

You can also follow our story through Aiden Koch