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River and his new liver need your help!

River(13 m.o.) was born with a very rare metabolic disorder called Maple Syrup Urine Disease(MSUD). He was diagnosed on his newborn screening and we are so lucky he is still here and with no brain damage! Since he was diagnosed at 6 days old, he has had to be on a very special protein restricted diet, have blood drawn fairly frequently, be seen by metabolic and genetic specialists, and always has been at risk for metabolic crisis which can result in brain swelling, coma, or death.

Updates (1)

April 10, 2023

River is now 19 months old and almost 6 months post transplant. He's doing pretty great, loving all the new foods and willing to try new things all the time! We are struggling with our first liver rejection and will be back in Texas in a few days to have his second biopsy and some more treatment. We have been backing off on his immunosuppressive drugs to try to help his EBV number come down. River got EBV from his liver donor, it stands for Epstein-Barr Virus. It doesn't cause problems for most people, but can cause something called PTLD in transplant patients. Because of us lowering his meds to try and prevent this, River has gone into moderate rejection. River's daddy passed away in November while we were in Texas after his transplant. The past 6 months have brought life change after life change for River but he still has such a great attitude and stays my happy boy which I'm so thankful for. His favorite new food he gets to eat is "noodles" which he asks for by name every single day! Noodles to River is spaghetti and meatballs, chicken noodle soup, or any pasta with meat sauce! It makes me so happy to see my little one exploring new foods he never would've been able to try. Please send us love as we go through these setbacks with his rejection and EBV.

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December 4, 2022

We’re sending all our love to your beautiful family. May healing find you in every way.

Rebecca Bean

November 29, 2022

River, you have great things ahead of you. My heart goes out to you and your family.

Gabi Munoz

November 29, 2022

all my love to you and river

mackenzie smith