CF is a genetic, life-shortening disease that affects all organs, especially the lungs and pancreas. It makes it difficult to breathe and to fight infections, often leading to extensive lung damage and respiratory failure. Mucus that blocks the pancreas causes weight gain difficulties and a range of digestive issues. 

Everyone who meets George now (at nearly 1.5 years old) remarks on how loving (quick to hug, which isn’t ideal for someone so susceptible to germs!), absolutely fearless, stubborn and strong he seems. And he is strong, but CF is often called an invisible disease in the early years.

He takes enzymes before every meal, as well as a daily special vitamin and a hefty dose of salt. He does a daily round of chest PT in his vest – which increases to 60-80 minutes a day while he’s sick. He'll soon start a nebulizer and modulator medications.

Our hope is that George feels like a normal kid. Though the reality is that he can’t play in dirt like other kids, we wash his hands constantly to protect him against pseudomonas bacteria that make respiratory infections incredibly challenging to fight. And worst of all, he can’t be around his brother Lewis, his best friend, when Lewis has even a minor cold, because what’s mild for Lewis can spiral into a “CF exacerbation” requiring antibiotics. Every day brings mental hurdles – worrying about things like frequent antibiotics and antibiotic resistance, colds that might turn into a hospital stay and keeping him on his growth curve. 

THERE IS NO CURE YET

George is eligible for a “miracle drug” called Trikafta that he’ll start when he turns two. It has extended the median life expectancy of those with CF to 65. This is truly miraculous. But 10% of those with CF are still not eligible -- or are unable to take Trikafta due to side effects. 

We cannot accept 65 as the ceiling for George’s life. We also don't yet know if George will be able to tolerate Trikafta. 

HOW TO HELP END CYSTIC FIBROSIS