Meghan, a carrier of the cystic fibrosis (CF) gene, knew there was a one in 17,000 chance her daughter Mady would be born with the genetic lung disease that results in thick, sticky mucus in the lungs. After giving birth at a local hospital, doctors suspected Mady may have CF and referred Meghan to Johns Hopkins Children’s Center. A few weeks later, Mady underwent a sweat test to check her sodium levels at the Children’s Center, and her high sodium levels confirmed she indeed had CF.

Mady began taking pancreatic enzymes in her applesauce at six weeks old and returned to the Children’s Center every other week for checkups. Fortunately, Mady had very few symptoms and her visits decreased to once a month and eventually every three months. 

Despite undergoing two bronchoscopies, both resulting in weeklong stays at the Children’s Center, Mady has lived what her mom describes as a “normal life” — she just can’t touch or hug another individual with CF due to risk of cross contamination.

“It’s not a death sentence. They just have to fight a little harder in this world,” Meghan says. “Mady has the best doctors in the world going to do best job they can. I can’t be depressed about it; I have to raise this beautiful little girl.”

Mady, who is 7 — almost 8 — years old, has made the honor roll six times in a row and will finish second grade in summer 2017. She is an extremely active young girl who excels at gymnastics, cheerleading and basketball. To manage her disease, Mady takes 24 pancreatic enzymes a day, does physical therapy twice a day with an airway clearance vest, and undergoes five different nebulizer treatments (two in the morning, three at night). She returns to Johns Hopkins Children’s Center for check-ups with her robust care team once every three months. 

Listen to Mady's story.