Lease this WebApp and get rid of the ads.
Eileen
Joe
Mon Nov 8, 2010 1:03pm
173.188.2.23

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 sanity in the first year of our UCD story.

Lease this WebApp and get rid of the ads.
  • No answers!! — Kelly Corby, Tue Oct 26 6:26pm
    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... more
    • Re: No answers!! — Amy Hillis, Thu Oct 28 6:47am
      Kelly, So sorry to hear about Alysa's troubles. Cincinnati Childrens is also an advocate for liver transplants for UCD kids. I think Joe is right, gather your information and present it to the... more
    • Re: No answers!! — Joe Marquez, Wed Oct 27 9:45am
      Kelly, That sounds like some very close calls. When I had to make my case to the doctor's for Justin's transplant I put together a timeline of "incidents" showing that diet/medicine were not... more
      • Dr Reyes — Eileen (Jared's mom), Sun Nov 7 7:27am
        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
        • Re: Dr Reyes — Joe M., Mon Nov 8 9:01am
          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 — Eileen, Mon Nov 8 1:03pm
            • Re: Joe — Joe M., Wed Nov 10 10:04am
              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
Click here to receive daily updates