My granddaughter Tula was diagnosed with cystic fibrosis almost 16 years ago, just a few days after birth. In 1955, the average life span for a baby born with CF was 3 years of age. When Tula was born in 2010, it was ~37–40 years. Today, many are living well into their 50s, 60s, and longer!  For the first time in history, the majority of people living with CF in the U.S. are age 18 or older!

In cystic fibrosis, the body's mucus becomes thick and sticky like glue or honey. This mucus blocks airways in the lungs, causing breathing problems and frequent, serious infections. In the pancreas, it blocks the release of enzymes needed for digestion.

Tula takes Trikafta, the modulator that targets her defective CFTR gene and reduces mucus production, twice daily.

Good news: Tula’s pulmonary function is great! Her weight is on par for her age group (after discontinuing overnight tube feedings 4 years ago)!

Because Tula cannot properly absorb nutrients, she takes enzymes that mimic the natural function of the pancreas before every meal and snack. These enzymes are critical for digesting carbohydrates, proteins, and fats needed for growth, development, and staying healthy. Absorption is still not 100% efficient even with enzymes; Tula also takes daily CF-specific multivitamins and mineral supplements. CF-related digestive issues, unfortunately, remain challenging for her.

Tula is 15 years old and attending online high school. She plans to graduate early and looks forward to attending college in a few years, possibly focusing on architecture. She spends her free time hanging out with friends, babysitting, and recently got her first job at an art gallery. She turns 16 in June and begins driving lessons in March. She said to tell you, “I am healthy and appreciate your support!”

CFF is the primary funder of research that led to therapies that help Tula and many others manage their CF while having the chance to live full and active lives. CF is still a part of them, but CF does not define them!  I fundraise to help realize the day when CFF means Cure Finally Found! Every $ pushes us toward the finish line!