The Colon Family

Initial Backstory

"Our daughter, Lucia Colon, was diagnosed during pregnancy with severe left-sided Congenital Diaphragmatic Hernia (CDH). Lucia is a twin, and from the moment we received her diagnosis, we knew she would require specialized care and face a difficult road ahead. To ensure Lucia received the best possible treatment, our family made the difficult decision to relocate from Miami, Florida, to St. Petersburg, Florida. This move allowed us to be closer to the specialized medical team and hospital equipped to care for a child with severe CDH. After birth, Lucia’s condition required immediate intensive medical intervention. Due to the severity of her CDH and the impact on her lung development, she was placed on ECMO (Extracorporeal Membrane Oxygenation), a lifesaving form of heart and lung support used for critically ill infants. Seeing our newborn daughter connected to ECMO while also caring for her twin sibling was an overwhelming emotional and financial challenge for our family. After spending time on ECMO, Lucia successfully underwent CDH repair surgery. We are incredibly grateful that the procedure was successful and that she continues to make progress. However, her journey is ongoing. Lucia remains hospitalized and is currently awaiting discharge as she continues to work toward the milestones necessary to safely come home. Throughout Lucia’s hospitalization, our family has incurred significant out-of-pocket expenses, including travel, lodging, meals, parking, and other daily costs associated with being away from home for an extended period. The relocation from Miami to St. Petersburg, combined with time away from work and the demands of caring for both Lucia and her twin sibling, has placed a substantial financial burden on our family. Despite these challenges, Lucia has shown remarkable strength and resilience. We are hopeful that she will soon be discharged and able to begin the next chapter of her recovery at home."

Update 7/1/2026

"Lucia remains hospitalized and continues to make progress in her recovery. She recently underwent surgery to address gastroesophageal reflux and is recovering well from the procedure. Her medical team is currently focused on helping her advance with bottle feeding, and she continues to work toward meeting the milestones needed for discharge. We are grateful for her progress and appreciate everyone’s continued thoughts and support."

Update 8/2/2026

"Lucia continues to make steady progress in her recovery from Congenital Diaphragmatic Hernia (CDH). She is getting stronger each day and has been working hard on her bottle feeds while continuing to recover from her reflux surgery. We are grateful to see the progress she has made and are encouraged by each new milestone she reaches. While her journey is not over, Lucia continues to show incredible strength and resilience. We remain hopeful as she keeps growing, healing, and moving closer to the day she can be home with our family. Thank you to everyone who has prayed for Lucia, supported our family, and followed her journey. Your kindness, encouragement, and generosity have meant more to us than words can express. Please continue to keep Lucia in your prayers as she continues to heal and reach the milestones ahead."