Kaylee, who just turned 14, was diagnosed with Cystic Fibrosis when she was 10 months old.
Cystic Fibrosis affects 30,000 children and young adults in the US alone and is the most common fatal genetic childhood disease.
- Kaylee takes an average of 30 pills a day
- Wears a vibrating vest twice a day for 30 minutes to loosen sticky mucus that threatens her lungs by trapping bacteria which leads to lung infections that eventually destroy the lungs. Once lung capacity falls below 30%, Kaylee faces the choice of lung transplantation vs death.
- Inhales 3 different medications into her lungs to help dissolve the mucous.
- Kaylee receives a high calorie, pre-digested formula through her feeding tube in her stomach at night to help her meet her increased calorie demands. Reasons for increased calorie demands include: constantly fighting lung infections, breathing faster than a healthy person, coughing frequently and having a scarred pancreas that does not allow pancreatic enzymes to get out to digest her food.
- She spent the last 2 week of 8th grade hospitalized at Children’s Hospital in Seattle, instead of celebrating with her classmates.
Kaylee has a 50% chance of celebrating her 37th b-day but we hope to improve those odds with better treatments.
Although great progress has been made toward a cure, we continue to lose precious lives to this disease.
There are very promising drugs in the pipeline that will essentially cure this cruel disease. It is more crucial than ever to continue to support the CF foundation with a cure so close. The CF Foundation is one of the most efficient organizations of its kind, with nearly 90 cents of every dollar raised available for investment in vital CF research, care and education programs.
This cause is dear to my heart. Please join me in supporting this special organization by donating or supporting an upcoming event. To learn more about the Cystic Fibrosis Foundation and to find an event in your area, please visit their website at: https://www.cff.org/