"I found the National Urea Cycle Disorders Foundation when I was 25 weeks pregnant with my second child, a boy. He was diagnosed before birth with OTC. My own journey with urea cycle disorders began a few years earlier when I had a difficult pregnancy with my daughter, Sayla. We later learned that both Sayla and I are OTC carriers. When we decided to have another baby, we found out at 12 weeks that we were expecting a boy. I was thrilled, but OTC was a fear. All the Facebook stories of boys with OTC were very scary, and there was no hope anywhere until I found NUCDF. The angels at NUCDF helped me understand his diagnosis and understand that there was a lot more than just the bad in OTC. Thankfully, he had a mild variant. They walked me through the delivery of our son, Salathiel, and helped figure out his formula and medications. They truly held my hand as I learned to navigate life as a mother of two with OTC. At the 2024 NUCDF Family Conference in Houston, we found a loving community ready to support us. NUCDF was our angel, and these babies are a gift from God. I thank God every day for giving me the gift of being an OTC mother, and for giving us the opportunity to provide hope to other OTC families! We want our story to be the hope we were looking for when we learned of Salathiel’s diagnosis. Not a day goes by where I don’t think about what would have happened if I hadn’t found NUCDF and attended that conference—it completely saved Salathiel’s life. God not only gave us the gift of Salathiel’s life, He also gifted us a community, NUCDF, that is always there for us."
