A Parent’s Testament

From the time our daughter was born, she suffered from respiratory, sinus, and multi-system ailments. We found ourselves in a sea of confusion and misdiagnoses, coupled with a lack of care from a host of medical systems around the world (literally from Europe to the U.S.), and on top of this, our daughter’s health was worsening. As parents, we often felt helpless and disappointed by the lack of expertise and indifference demonstrated by many physicians. We found many physicians would continuously throw heavy medications at her symptoms without questioning the cause or gave up without referring her to specialists. These experiences were so hurtful yet commonplace that we had almost come to expect it.

We felt alone in the struggle to find and access adequate medical treatment for our daughter and spent countless nights in the emergency room and innumerable days home sick. Prior to a diagnosis, we had no answers for friends or family who repeatedly asked when things would improve. Moreover, being so prone to respiratory infections meant our daughter often couldn’t participate. It was hard seeing friends and even relatives drift away. Nevertheless, our daughter remained incredibly open-hearted, optimistic, and hopeful. Against all odds, she continued her education through procedures, hospitalizations, and long-term illnesses. While COVID-19 further exacerbated the isolation, it was simultaneously a reprieve in that our daughter could more easily attend her grad school obligations from home, virtually. However, as her health declined further, we knew we were racing against time.

After exploring respiratory advocacy groups online, we found ‘The Wright Cystic Fibrosis Screening Tool© for BIPOC Patients’, which became a lifeline. Reading through the checklist from salty skin, coughs and wheezing, recurrent and chronic respiratory infections, nasal polyps, frequent loose stools, poor growth, and recurrent pancreatitis — we were fortunately aware that our daughter, unfortunately, checked each box. Finally, we could make sense of what had plagued our daughter’s ENTIRE life, from coming home from the hospital as a newborn with a respiratory infection to the multi-organ system symptoms that were never properly explained nor explored. The screening tool meant we were no longer in the dark. This underscored something we long suspected and even had physicians saying, “If she weren’t mixed, I’d think she would have CF,” despite our history of family members with CF passing away early because of the genetic disease. However, none of the physicians ever followed up on these suspicions or took the time to test her.

That was about to change when we reached out to Dr. Michele and Terry Wright at NOAACF; suddenly, we were no longer alone in this struggle. They were empathetic, welcoming, and understanding in ways we had not experienced previously. NOAACF is experienced in navigating medical systems that may be unfamiliar with underrepresented patients facing this disease. From navigating home oxygen needs to respiratory medical equipment, Dr. Michele ant Terry Wright have been by our side sharing best practices during tune-ups and ensuring smoother transitions home from the hospital. The NOAACF’s founders are some of the kindest people we have ever met, they were attuned to our urgent situation and know firsthand about navigating life with CF. Their advocacy has been incredible, and their support has been invaluable as we broach unfamiliar terrain on our path towards improving her health.

Through this, our daughter hopes to become well, lead a relatively normal life, and enjoy the many milestones one ordinarily takes for granted as a young woman. Thanks to NOAACF, our daughter’s hope is rising in a way we have not seen recently. She envisions a better tomorrow and hopes to breathe easier in the future and help others along this journey. Knowing we’re not going it alone because we have NOAACF as a resource means – everything.

Cami Rieger
March 15, 2023