Sam has been living with an undiagnosed genetic syndrome. From multile genetics tests to procedures like strabismus correction, radiology with sedation, hip surgeries and the development of osteopenia and epilepsy, the care and support Sam and our family receives is unmatched. After a 10 year wait, Sam was officially diagnosed with ReNU syndrome in August 2025. Sam has been followed closely by Dr. Caluseriu in genetics since he was an infant in the NICU. This is a remarkable development and step for Sam’s family, and a testament to the importance of genetic research and testing.

At 10 weeks old, Marigold began showing signs of breathing trouble. She was struggling to breathe without extensive effort. Her family brought her into emergency, and she was admitted right away. At that time, doctors suspected a cold and discharged them five days later. They quickly returned but this time via ambulance. Marigold was immediately admitted to PICU on high flow oxygen, and she was diagnosed with aspiration pneumonia. This began the family’s feeding journey.