Adriana

Shortly after Adriana was born, it was clear she was struggling. Her oxygen saturation levels were too low, and she developed a terrible sounding cough. Through x-rays it was discovered she had pneumonia and situs inversus totalis, a mirror-image placement of her organs.

We had never heard of this before and were completely shocked and perplexed. Because of this discovery, it was decided that the most likely cause was primary ciliary dyskinesia, or PCD. She was officially diagnosed about two weeks after she was born.”

Ten years later, the family welcomed their third child, Valerie. Twenty-four hours after she was born, she was taken to the NICU where she was placed on oxygen because of her low oxygen saturation levels. It was later confirmed that Valerie also had PCD. 

I didn’t need a diagnostic test. I knew she had PCD at that moment. We are constantly managing multiple doctors’ appointments and advocating for special accommodations. But the hardest part is the feeling of always waiting for the other shoe to drop and worrying about how they’ll manage their condition when they’re one day on their own.”