In November of 2022, Lily Cipriani was diagnosed with severe Pulmonary Hypertension, a type of high blood pressure that affects the arteries in the lungs and the right side of the heart. Doctors at Cincinnati Children’s say Lily, age 8, is the only one in the world that has this RASA 1 gene that caused severe pulmonary hypertension. In January, doctors found arteriovenous malformations (AVMs) in Lily’s lungs, caused by the RASA 1 gene, making it difficult for her to breathe. She is now on oxygen all the time and listed for a lung transplant.
Lily’s mom, Lindsay, is a longtime nurse at Cincinnati Children’s. To rally around the Cipriani family during this challenging time, more than 50 of Lindsay’s fellow nurses from the PICU in addition to colleagues from around the hospital gathered in the Sabin courtyard. They wore purple t-shirts since purple is the color for Pulmonary Hypertension awareness. Lily helped design the shirts that had the “PHighter” logo written on the front. On the back, the design featured a set of lungs with lilies in the center with the words #LilyStrong across the bottom.
Lily ended the day with these words, “I hope the t-shirts show how strong I am.” As many of nurses said on this day, Lily is one of the strongest, bravest girls I have ever met. She can fight anything that gets in her way.