Home
Our Legacy
Our History
Our Stories
About Jane
OTC Awareness
OTC Fact Sheet
DNA Sequencing
About
Resources
OTC Resources
How to be Tested
FAQ
Contact Us

Jane Wright Earl OTC

Home
Our Legacy
Our History
Our Stories
About Jane
OTC Awareness
OTC Fact Sheet
DNA Sequencing
About
Resources
OTC Resources
How to be Tested
FAQ
Contact Us
  • Our Legacy
  • Our History
  • Our Stories
  • About Jane
Featured
Baine Brady Bobka - Genetic Defect Identified
Baine Brady Bobka - Genetic Defect Identified

Two years prior to his death, Baine lived with frequent stomach pain, throwing up, and headaches. These episodes would appear in the middle of the night or on the bus coming home from school; never in the morning. During his episodes prior to 2017, Baine was able to eat and drink even when his stomach hurt and he was throwing up.

Read More →
Dallin - Still No Test for OTC Deficiency 2013
Dallin - Still No Test for OTC Deficiency 2013

In September of 2013 Dallin ate a steak dinner for his 10th birthday and began to feel ill a few days later. While still not feeling well, Dallin insisted on attending several days of rigorous football practice in 100 degree heat. Six days later he was airlifted from Saint George, UT to Primary Children’s hospital in Salt Lake city, UT, with symptoms that included “silly” behavior, confusion, dilated pupils, and delirium.

Read More →
Lynn Dell Kraamia - 20 Years Later: Suspected Genetic Link To OTC Deficiency
Lynn Dell Kraamia - 20 Years Later: Suspected Genetic Link To OTC Deficiency

According to his family, his diet consisted of salads, Pepsi, and Snickers candy bars; he preferred sweets over meat. The doctors suggested he may have instinctively self-medicated himself with the carbs in the Snickers and Pepsi as well as the Phenylalanine in the Pepsi.

Read More →
Kenneth Dansie - Questions and Answers: Living With OTC Deficiency
Kenneth Dansie - Questions and Answers: Living With OTC Deficiency

1984 - Kenneth’s cousin, Lowell Kmmerath, introduced him to the idea that his symptoms were related to a family genetic defect. Because of Kenneth’s earlier diagnoses of Reye’s Syndrome, the connection to an OTC defect was delayed. Dwain Leslie Dansie, older brother of Lynn and Kenneth, died in 1942, age 4, from a miss diagnosed appendicitis. The critical need to identify and develop a standard means of testing and treating OTC deficiency continued.

Read More →
Lynn Dansie - High Ammonia Levels Pivotal to OTC Deficiency
Lynn Dansie - High Ammonia Levels Pivotal to OTC Deficiency

Throwing up and being sick was apart of Lynn’s life starting in grade school. Lynn naturally ate foods that made him feel good and stayed away from foods that did not make him feel good. When Lynn was drafted into the army, he was at the low end of the weight requirement and was hospitalized multiple times with flu- like symptoms that the doctors could not determine the cause.

Read More →
Mickel Thorsen - Gene Therapy
Mickel Thorsen - 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, U of U, test him to see if he was OTC active. Preliminary testing included a protein challenge and a blood ammonia tests to measure and evaluate Mickel’s OTC deficiency.

Read More →
Lynn Allen Thorsen - Limited Treatment Protocols
Lynn Allen Thorsen - Limited Treatment Protocols

1983 - Lynn had multiple crisis 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.

Read More →
James Lowell Kamerath - Anomaly Solved: Cousins Share Similar Symptoms
James Lowell Kamerath - Anomaly Solved: Cousins Share Similar Symptoms

In 1984, after multiple episodes of sickness, hight ammonia levels, hospitalization, and comas that appeared to be terminal, J L’s doctors referred him tot he Mayo Clinic for what turned out to be a diagnosis of OTC deficiency.

Read More →
Don Neldon Thorsen - “One In A Million” Metabolic Disorder
Don Neldon Thorsen - “One In A Million” Metabolic Disorder

Don was a child that nothing bothered him and he 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.

Read More →

 

Back to Top




Jane Wright Earl OTC ©copyright 2018 All Right Reserved.