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1986 - Lynn Allen Thorsen

Birth: 1973 Metabolic-OTC symptoms confirmed 1986 age 13 Death: 1993 age 20

Limited Treatment Protocols

In 1983, Lynn had multiple crises that included nausea, vomiting, and high ammonia levels that were diagnosed as a rare metabolic disorder. The treatment protocol included nitrogen scavenger drugs and a low protein diet. The anomaly of Lynn and his brother Don having a “one in a million” metabolic disorder was broken when his grandmother compared his symptoms with her cousin’s son, who had the same symptoms.

At age 13 in 1986, Lynn presented the same symptoms as his brother, Don, that included erratic behavior agitation, nausea, and large pupils.

In 1990,Lynn’s doctor referred him to Dr Leonard, geneticist at the University of Utah, where he was given a high protein challenge in addition to frequent testing of his ammonia levels. The results confirmed Lynn’s high ammonia levels were connected to a possible OTC deficiency. His unusual metabolic condition had no medically proven tests or protocols available for treatment of this rare glitch in his gene.

Sadly, Lynn died in 1993 during his fourth crisis while waiting for a liver transplant. Because of Lynn, the similarities with his cousin’s symptoms created a new understanding between a “once in a life time” rare oddity to an illness that had common ground among family members.

Note from JoAnn Thorsen, Lynn’s mother:

I wish I had pushed harder with my sons, Don and Lynn. The medications didn’t work for them, but 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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