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1982 -Don Neldon Thorsen

Birth: 1969 Metabolic symptoms confirmed 1978 age 9 Death: 1989 age 19

“One In A Million” Metabolic Disorder

Don was an easygoing child who was willing to share with everyone. Age 9, Don had a drastic change in his behavior. His parents noticed he would “act drunk” and would go through periods of anger and would try to “fight” everyone. While eating, he would inadvertently miss his mouth and throw food over his shoulder.

During multiple visits to the doctor, his behavior would return to normal because his high ammonia count would have returned to regular levels. His behavior would be more normal in the morning, but would progressively deteriorate by evening.

It was suggested Don could be using erratic behavior as a play for more attention. However, he would repeat the same behavior when he was alone in a room. His parents contacted a new doctor who referred him to a pediatric neurologist.

At age 13, Don suffered a hyperammonemia crisis, his fourth since age 9, displaying symptoms of mood swings, confusion, stomach pain, and excessive sleepiness. He was hospitalized for two months with severe brain damage. For six and one-half years, Don lived at home with his family as an invalid requiring 24-hour care.

The high ammonia levels and irregular behavior were considered an anomaly and a “one in a million” disorder that would never happen again. It was classified as a metabolic condition with limited information available to explain its impact. Because of Don, his sacrifice provided the earliest medical documentation in our family of a rare metabolic condition.

Note from JoAnn Thorsen, Don’s mother:

I wish I had pushed harder with my sons, Don and Lynn. The medications didn’t work for them, but have helped my son Mickel. I wish I would have had the knowledge that is available today. Life would have been different. I see hope for my grandchildren if they are diagnosed. Knowledge is their pathway to taking better care of their health, if they are potential OTC carriers. Things are different now; they have better options and better care than the information available for Don and Lynn.


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