I originally joined this site for support dealing with my husband's newly diagnosed illness of OTC deficiency. I was contacted by the executive director of the National Urea Cycle Disorder and received some much needed information and support. Sadly, I have to report that my husband passed away from neurological complications caused by this disease in May 2011. I would now like to be the support someone else needs while dealing with this or any other Urea Cycle Disorder. These disorders are rare but have dire consequences. I am also a registered nurse and nurse educator at a local university. The wrestle I experienced between my heart and my head was difficult to say the least, but I learned a lot about the "system", including, insurance, medicaid, and problems when it comes to probate after the death of a spouse. If anyone is dealing with the possible loss of a spouse in the near future, especially if there are stepchildren involved, please contact me so you won't have to go through some of the heartache I have.