We’ve been waiting for Archie for a very long time. Our family had been waiting to adopt for 5 years. When we finally got the call we raced to the hospital across the state. We were met at his room by his provider that just said “we need to talk.” They had it figured out rather quickly with his atresia and ears that he had CHARGE. A quick genetic test confirmed. We were quickly thrown into an unknown world. A NICU two hours from home, a genetic disorder we, and most his providers had never heard of, and every day another scary occurrence. He had five atresia surgeries, three code blues, and somehow lived for five hours at his birth hospital on nasal cannulas. After seven months in the NICU Archie got to come home.
Having a rare condition has taught us so much. His 10 year old big sister has learned she wants to be a NICU nurse. And she’d be a damn good one! Mom and Dad learned patience and resilience that only a tiny CHARGEr could teach. Archie not only has CHARGE, but also Kallmann syndrome. We’ve all learned how to speak up and advocate for our unique little guy. We’ve learned to just say yes to the help that is out there. We lean on our community more now than ever. He brings so much joy and unity to everyone he meets. We sure would like to take away his pain and struggles but we love Archie and every little bit of him!
