Apr 27

Apr 27 Meet Gianna, your 2018 Patient Hero for the Cystic Fibrosis Center

Gina was five months pregnant with Gianna when she received a call that she says shattered her life: Gianna had cystic fibrosis, a devastating disease with no cure.

Gina had never even heard of cystic fibrosis before, and now she was told it was a “death sentence” and life would be difficult not only for her child, but for the rest of the family as well. After sleepless nights and many tears, Gina and her husband prepared themselves for an uncertain future, praying that they would receive the courage and wisdom to support the child they already adored.

“My daughter is my greatest gift, and my greatest teacher,” says Gina. “I am totally in love with her.”

Gianna has received care from Packard Children’s Cystic Fibrosis Center nearly all her life. At 4 months old, a bacterial infection caused one of her lungs to collapse. Gianna recovered well, leaving the hospital a week earlier than expected. It would, unfortunately, not be the last time Gianna was admitted to Packard Children’s. Over the years, she has been hospitalized five times. Gina and her husband have worked closely with Gianna’s care team to ensure she can live as normal a life as possible.

Now 8 years old, Gianna is a bubbly little girl who loves singing, dancing, playing tennis, and visiting her grandmother in Colombia. She will be attending her first Summer Scamper this year, and will be on stage to help us count down the start of the race.

Hospitalizations can be tough, but Gianna and her family find support from hospital staff like pediatric pulmonologist Carlos Milla, MD, and one of Gianna’s favorite nurses, Kathleen O’Rourke, RN.

“Not only is Kathleen a great nurse, but she connected in a playful way with Gianna,” says Gina. “The staff at Packard Children’s are phenomenal and a part of our family now.”

Gina adds that having a child with a life-threatening condition has taught her many things. She has learned to live in the moment, and to accept things as they are, not how she wants them to be.

“Cystic fibrosis has also taught me to live in constant gratitude,” she says. “It is a reminder of how precious and fragile life is.”

We are grateful for our wonderful Patient Hero families, and also for our donors who support them. Your generosity means that Gianna and her family have access to the care they need and are able to build precious memories together.