A week after Penelope was born, we received a call from her pediatrician that her Newborn Screening had come back positive for Cystic Fibrosis. He then explained the condition, and told us to start taking the ppl steps to get established with the Cystic Fibrosis Clinic at OU Children’s. I remember feeling numb. I couldn’t speak, couldn’t think, didn’t know what questions to ask. We had no idea that it was even a possibility for us to have a child with a genetic condition like CF. From there I (through tears and sobs) made all of the appointments we needed to start figuring out next steps. 

Since then, we have established care with our pulmonologist at the CF Clinic, and Penny has started to grow and do very very well on her treatments. 

We were not expecting this diagnosis by any means, but we will continue to advocate and pray for a cure.