It is so good to hear from those of you who have older children with urea cycle disorders! We have overcome the challenging early years but now share the ongoing struggles that our children face, or will face, as adults. The unknown is often what worries us the most. We try to live it day by day but this isn't always easy!
my daughter is 15, my son only lived to 8 days, he would have been 19 this year. They know so much more now. My daughter and I have OTC. I have only started having problems within the last ten years, ... more
hi my name is marta and i have citrullinemia. i am the oldest living with this in the world i guess they told me. i had a lot more troubles in my teens taking care of my health and eat to much or not ... more