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 said - they work hard to motivate people to give to fund research for a cure. If people were to think of transplant as an acceptable way to resolve UCDs that diminishes the urgency. I think for some UCDs transplant does not work as well as for others. . .and kids still die from tranplant. . .so a better alternative should be found. . .however. . .I try to understand other perspectives. . . .
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
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
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
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
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