Mickel Thorsen - Gene Therapy

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1989 - Mickel Thorsen

4th Generation
Descendant of George Wright Earl

Birth: 1975
OTC symptoms confirmed 1989 age 14
Living with OTC

Gene Therapy

1986 - Because Mickel’s two brothers, Don and Lynn, had been diagnosed with symptoms of OTC deficiency, his mother requested that Dr. Claire Leonard at the University of Utah, test him to see if he was OTC active. After a protein challenge and a blood ammonia test, Dr. Leonard determined that he was a carrier of OTC deficiency.

1999 - Mickel applied and was accepted into a program in Philadelphia, PA where he participated in a gene therapy procedure. While in Philadelphia, PA, Mickel’s behavior became mean and angry resulting in an OTC crisis.

2000 - Mickel stopped attending treatment clinics for check-ups in Philadelphia, PA and the University of Utah. Mickel has not had an episode for several years and has lived a very productive life. After marriage and children, his focus did not regularly include OTC deficiency; he would only think about it when he had to take action to remedy his symptoms.

Mickel is mostly a vegetarian and eats very little meat; he manages his OTC with the help of his wife. When his behavior seems out of character, aggressive, or his eyes become dilated he takes sodium phenylbutrate medication and pumps himself up with sugar until he gets back to normal.

Mickel’s symptoms have benefited from medications that include sodium phenylbutyrate, sodium benzoate, sodium phenylacetate. Mickel’s older brothers Don Thorsen, 1989, and Lynn Thorsen, 1993, both died from complications of OTC deficiency.

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Note from Mickel Thorsen:

Everyone with OTC deficiency is unique. This can include how each person reacts to a trigger, what treatment is used to treat a crisis, and the day to day management with medications and diet—all of which may differ from person to person. The success of living with OTC is to be tested and if positive get a treatment plan and some medication.