Lilly’s story begins 17 years ago in Germany while her father was in the AF. A few months after her birth  it became obvious something was wrong. CF is a rare disease and it took many months and tests in Germany and in the USA to get a diagnosis. Today there is screening for all newborns but then it was not required for military dependents overseas. At that time her life expectancy 27 years. Today a person born with CF has a life expectancy of 57. An amazing feat!

Thanks to years of dedication by parents and the CFF there were treatments to slow her lungs from clogging with mucus and to aid her pancreas in absorbing  nutrients which saved her life. As she has grown there were more health challenges such as osteoporosis. 

About ten years ago the FDA approved a breakthrough drug that enabled the lungs and other small ducts to clear which works for 80% of the 30,000 CF patients in the USA. We hope for such a drug for Lilly and the other 20% of the CF patients. Your donations to the CFF helps to realize a cure found for all CF patients.

Every school day she wakes up at 5:45 a.m. to inhale nebulized medicine and has a machine shake mucus from her lungs to slow down the progression of cystic fibrosis.

 Lilly amazes us by coordinating  all her medical appointments, daily regimens of treatment along with being an outstanding student in her advance placement classes and serving on Student Council. She played  varsity tennis and babysits and dog sits. You can learn more about her life and many medical challenges by  on the short video made by her dedicated mother at the end of this message.

Every dollar you donate to Lilly’s Sunshine Team advances the research and science needed to drive our shared dream forward – a cure for everyone with CF.

Will you help us end cystic fibrosis?

All donations are tax deductible and all dollars are greatly appreciated. We also  accept  checks made out to CFF. With much gratitude as we face these challenges together. 

Ruth and  Hank Lapp