Our Xtreme Hike Story
We are hiking as Team Nuts for Natalie!
Natalie is a fun, energetic 2-year-old living with a life-shortening disease called Cystic Fibrosis. She loves playing with her big sister, running around outside, and laughing. A few months ago, Natalie was also diagnosed with austim. She's a fighter, and we can't wait to show our support for her by completing this Xtreme Hike!
CF is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, defective genes cause a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. CF is exceedingly rare; there are only 30,000 people in the U.S. with the disease.
Perhaps the most important need that the CFF serves is the funding for the development of new drugs to treat the root causes of CF. Because CF is so rare, there is little public funding for research, and the CFF receives no federal funding at all. By pursuing a wide range of promising strategies, the CFF has built a robust pipeline of approved and potential therapies that tackle CF from all angles, including drugs targeting the underlying cause of the disease.
Nearly every drug recommended for CF was made possible because of CF Foundation support. Last year, we received very positive news about a drug that will help Natalie and others with mutations that have so far not been able to be treated. This "triple combo" drug was approved for patients 12 and older. And clinical trials for kids younger than 12 are underway, which means Natalie has a shot at gaining access to this life-changing medication in the next few years.
Here's what Natalie does every day to stay as healthy as possible:
• 48,000 units of enzymes with every meal and snack
• 2-3 airway clearance treatments with her Vest and albuterol
• 1 dose of nebulized Pulmozyme to thin her sticky mucus
• 2 doses of acid reducers daily
• 1 dose of antibiotics to keep her food moving through her digestive system and reduce inflammation
• 1 daily probiotic to keep her tummy happy
• Special vitamins designed for CF kids
• Lots of extra salt to optimize her organ function