Chronic but Iconic Noah the Kid- ney Warrior

Chronic but Iconic Noah the Kid- ney Warrior Welcome to our kidney transplant journey! This page is for updates on Noah's journey to transplant. He has a rare gene mutation of coenzyme q10 deficiency.

Noah was diagnosed with FSGS and is currently in kidney failure.

Well Noah had a bad night. After several bouts of vomiting his Doctor requested he go to the ER in Syracuse. He didn’t h...
08/29/2026

Well Noah had a bad night. After several bouts of vomiting his Doctor requested he go to the ER in Syracuse. He didn’t have a fever but he was clammy and then started a runny nose. He tested positive for a cold virus. After some iv fluids to make sure he didn’t dehydrate he was released to go home this afternoon. Praying the cold symptoms don’t get any worse. There are very few medications he can take. But Noah being Noah as soon as he got home he came to visit Nana and he was jolly and wanted to play! His parents however were exhausted from no sleep.

New York or bust! Now that clinic is only once a week Noah can go to home sweet home. I will probably only post once or ...
08/27/2026

New York or bust! Now that clinic is only once a week Noah can go to home sweet home. I will probably only post once or twice a week now to let everyone know his progress. Our little warrior has won this battle! And yes packing 2 months worth of stuff to take back home in a Prius was challenging 😆.

All Noah’s levels were good at clinic again. He is getting so strong and has so much more energy. He has now graduated t...
08/26/2026

All Noah’s levels were good at clinic again. He is getting so strong and has so much more energy. He has now graduated to only needing to getting labs and be seen by the Doctor once a week! Thank you so much everyone at Boston Children’s Hospital. All of the staff has been so amazing. And thank you to our home community especially Taylor Lee Fit and Suzy Q's Ice Cream Shoppe whose generosity helped make going to Boston possible for Noah. And thank you to all the staff at Golisano hospital that got Noah to the point that he could have a transplant and their relationship with Boston children’s that allowed him to go there. We are so grateful for all the support from all of you too. Your thoughts and prayers have meant the world to us. It has been such a positive experience and we feel so blessed. Thank you everyone ❤️.

08/25/2026

Uh Oh! The alarm on his feeding tube goes off several times a day- and night. Not sure how much longer he will have to have it. So looking forward to the day that thing will be gone!!

Watching Cars on Disney in our Cars pjs and slippers after a long day at the park. Life is pretty good now for little No...
08/23/2026

Watching Cars on Disney in our Cars pjs and slippers after a long day at the park. Life is pretty good now for little Noah.

08/22/2026

When Nana and Papa are in charge Noah gets to run all around the Boston Commons!

Boston loves you Noah! Noah loves this sign in the park and we “read” the letters every time we walk by it. We love Bost...
08/22/2026

Boston loves you Noah! Noah loves this sign in the park and we “read” the letters every time we walk by it. We love Boston and all it has done for our family!❤️

08/22/2026

Go! Go! Go!

08/22/2026

New driver training in the park today 😂

A big thank you to author Stuart Gillmore who blessed Noah with copies of 3 of his books. Noah’s favorite is the one abo...
08/22/2026

A big thank you to author Stuart Gillmore who blessed Noah with copies of 3 of his books. Noah’s favorite is the one about a duck Cornelius learns to Fly but I think All by Myself is pretty funny. We so appreciate your kindness and well wishes. It means the world to us that so many people are praying and sending positive energy to Noah. So many people that have never even met Noah. It really is amazing and I really believe that is why he is doing so well. Thank you everyone! Gillmore

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Binghamton, NY
13901

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