On January 16, 2025, our sweet Noah was born. At 36 weeks pregnant, my doctor performed an elective ultrasound to check on his growth as he had been measuring larger. During that ultrasound, my doctor saw that there was fluid collecting in his abdomen. In addition to the fluid, she was concerned with the estimated size of his abdomen and his estimated weight being in the 95th percentile. I received additional ultrasounds, and a specialist confirmed the presence of the fluid and the need to deliver.

At 37 weeks pregnant, we drove to the larger hospital near us with a level 4 NICU to be induced. The morning after the induction started, I opted for a C-section as there was concern for a healthy delivery. The C-section went well, and after Noah was born, he was taken to the NICU. In the two weeks following his birth, doctors and specialists performed numerous tests to determine the cause of the fluid.

On January 30, 2025, we received news that Noah has an extremely rare lysosomal storage disease called Sialidosis. There are two forms of the disease, Type I and Type II. Noah has the most severe form of Type II, of which there have been less than 20 cases reported worldwide. We learned that there is no cure or treatment for this disease. For the form that Noah has, most babies are stillborn. Those that are not, have a very short lifespan and usually pass within a few weeks. Due to the severity of his disease and need for medicinal expertise, Noah will spend his whole life in the NICU.

Our miracle is that God gave us the opportunity to meet Noah. He is the sweetest boy with bright red hair and blue eyes. He melts into your arms when you hold him. To know him is to love him. We know that the days we have with Noah are limited. We are soaking up as much time with him as possible. Any funds we receive will be used towards medical expenses and end-of-life expenses. We are so grateful to all of our family and friends for coming alongside us with their support. It means the world to us.