My daughter is 10yr old and she has started to experience high ammonia levels after all these years! I have been thinking about a liver transplant for Alysa but think her drs at Chop aren't gonna agree with it! For years she has done fine but now she is starting puberty and I was told it's gonna get tougher! Anyone have any ideas on how to bring up the up the option of transplant for Alysa? Last Sunday they told me if she wouldnt have came to the hospital she would have passed away in her sleep die to her high ammonia, so I have to do what is gonna make our lives easier without worrying if she is gonna die on me! She is home doing well but just worried all the time! God Bless Everyone!!
My son was transplanted in Pittsburgh, when Dr Jorge Reyes was the transplant director (before he went to Washington) - he had Jared on the 'list' before we even agreed to transplant. When we were... more
I am very thankful to the foundation for all the information they've give us, support during crisis and work they have done for early diagnosis and research for a non-transplant related cure. That... more
Joe, 'trying to understand other perspectives' is my constant struggle, whether it be medical, political, or who makes the best chocolate :) Keep up the good work. And I agree, the NUCDF gave me my... more
Eileen, LOL! I hear ya. NUCDF was there to show us that a g-tube was a path to sanity and that our metabolic team wasn't always up on the latest protocols during Justin's first two years. But they... more