My Xtreme Hike Story

Please join me in supporting my daughter, Lilly, and all people battling Cystic Fibrosis by donating to our cause. 

CF is a progressive, genetic disease that affects the respiratory and digestive systems. There are close to 40,000 children and adults living with CF in the US and an estimated 105,000 people have been diagnosed with CF across the globe. 

Lilly was diagnosed with CF shortly after birth in 1999. At that time, the life expectancy for those living with CF was 21 years of age. Doctors explained that extraordinary breakthroughs in research supporting the treatment and potential cure for CF were occurring regularly and that one-day Lilly and others living with CF might live a “fairly normal” life. 

For her first 20 years, Lilly’s life was anything but normal: 

25-30 pills a day

2-4, 30-minute breathing treatments a day

2-3 hospitals stays per year

20+ surgeries and a dozen PICC line placements

Constant shortness of breath, daily stomach pain

Frightening loss of lung function

Lilly is now 24, so why emphasize her first 20 years…because four years ago, a major breakthrough - funded by donors like you! - occurred that changed the life of so many people living with CF, and now Lilly is living a “fairly normal life”.

Lilly has directly benefited from the financial sacrifices people just like you have made over the past 70 years allowing Lilly to a life  that is more than “fairly normal.”  Her life is extraordinary. Lilly graduated from USC - FIGHT ON! - and is now working in NYC living a life she/we never thought possible.

Please consider supporting our family and all people fighting to live with CF by donating to the cause.