01/12/2026
Today we are sharing something very personal about our little family.
This journey started when I was just 20 weeks pregnant and we discovered Tucker had a kidney disease during our anatomy scan. Fast-forward through a very scary, painful, and high-risk pregnancy, we gave birth at 37 weeks and Tucker spent 11 days in St. Vincent NICU. After being released we began making our rounds to all of Tucker’s Specialists. When he was roughly 8 weeks old, we discovered Tucker has 3 pathogenic genetic abnormalities - 2 being in the PMM2 strand and 1 in the C0L4A4 strand. This is what caused his PKD (Polycystic Kidney Disease) that was discovered during pregnancy, along with a very rare condition called Congenital Disorder of Glycosylation (CDG), as well as Alport syndrome. He was only given 3-5 years to live in October of 2023.
Today, Tucker is 2.5 years old and we cherish every moment we have with him. He is being cared for by over 17 Specialist between 5 different Hospitals in 4 different states.
While this diagnosis brings a lot of unknowns it also brings clarity. It gives a name to what we have been seeing and helps guide us towards the care, support, and resources he needs. Although Tucker is extremely medically complex with a very rare condition and we're still learning what it means for his journey, what we do know is that he is strong, resilient, and deeply loved. We're taking this one day at a time and are so grateful for our medical teams at Riley Children’s Hospital, Peyton Manning Childrens Hospital, Cincinnati Childrens Hospital, PACH, and Mt. Sinai’s Children’s Hospital. Our support systems mean the world, and we greatly appreciate everyone who has checked in, prayed, and stood beside us.
Thank you for giving us grace as we navigate this new chapter and continue to fiercely advocate for our son. 💚
