We are the Murphy Family, and our daughter, Eden Alexandra, was born on January 10, 2025. She was not breathing at birth, and that was the start of her short but complicated journey. She was in the NICU for thirty-three days and fought through a wide array of medical complexities and symptoms, including seizures, low muscle tone, inability to feed, difficulty breathing, apnea, and poor liver function, just to name a few. Her medical team had a few theories about what her diagnosis could be, but nothing could prepare us for the answer. A flag came back from the newborn screen for elevated levels of Very Long Chain Fatty Acids (VLFCAs). This prompted the medical team to send a genetic panel for Zellweger Spectrum Disorder (ZSD). At three weeks of life, we received confirmation that Eden was suffering from a severe form of ZSD, and her prognosis was terminal.

At this point we were faced with a series of impossible end-of-life decisions for our daughter. We ultimately chose to remove her ventilator and allow her to pass naturally. Eden was taken off the ventilator on February 9, and on February 11 was able to take her final breath outside with the sun shining down on her.