Another day

February 8th, 2025

The joy of having Natalia back home was so precious, yet heartbreakingly short-lived. After spending 12 days in the Pediatric Intensive Care Unit, and after being originally 152 days in the NICU she was finally discharged, filling our hearts with hope. But just two days later, we found ourselves rushing her back to the ER. For the second time in less than a week apart. The pain of seeing her go through this again is indescribable there are moments of helplessness, of questioning why our beautiful Natalia has to endure so much.

This time, after a frightening episode, she suffered an unexpected seizure, leading to yet another admission to the PICU. Now, new tests and labs are being done as doctors search for answers and determine the next steps in her care.

Bohring-Opitz syndrome is a relentless condition, one that deeply affects the lives of those who have it. But if there’s one thing I know for sure, it’s that Natalia is incredibly strong, stronger than I could have ever imagined. She’s made of steel, enduring more than any child ever should. Only God knows what her future holds, and we’ve learned to take life one day at a time. There’s no planning ahead, no certainty, just the love we have for her in this moment.

This journey affects our whole family. My wife, who carries so much on her shoulders. And my sweet, loving daughter Luciana—my little Lucci—who adores her sister with all her heart. We are holding on to each other, to faith, and to the love that keeps us going. No matter what, we will always be here for our Natalia.