We are so grateful you're here! We're asking for support of this cause that is fighting so tirelessly for our sweet Naomi to live a long, healthy and happy life! 

CF is a heredity, recessive (meaning you must inherit two defective genes to have a disease) complex-whole body disease caused by a mutation in the gene that is responsible for regulating the flow of salt and water throughout the body (we never knew the importance of salt until now!) There are over 1,400 types of defects in this gene that can prevent it from working properly and Naomi carries two copies of the most common defect (1 in every 29 Americans is a carrier). Because the flow of salt and water is disrupted in her cells, a very thick, sticky mucus builds up in her organs, including her lungs, pancreas and digestive tract where normally you would find a thin, lining of mucus that helps organs function properly and flushes out germs. However, this sticky mucus (think rubber cement) catches germs and bacteria and is very hard to get rid of. To try to help loosen the mucus from her lungs so she can cough it up, Naomi wears a "shaky vest" two times a day for 30 minutes each. She inhales 3 separate breathing treatments daily (15 minutes each) to help open her airways and thin the mucus. Because the mucus clogs her pancreas her pancreas can't release enzymes to process the nutrients from her food, so she takes enzymes every time she eats, so she can benefit nutritionally from the food she is eating. She goes to CF Clinic appts at Children's Hospital every three months for a 3-5 hour appt, where she sees between 5-8 doctors/nurses to check on every element of her disease. One of the key reasons for the frequency, is to a swab test to check if any dangerous bacteria got into her lungs that would need to be treated right away and to get blood panels done. 

Just months after Naomi was born and diagnosed, a medication called Trikafta was approved for use in patients with her mutations and she was eligible to start it once she turned 2. We worked tirelessly to keep her lungs as healthy as possible until she could start the medication. Now that she is 4, we just celebrated 2 years on this medication. We know it has helped preserve her lung function and improved her health. However, it isn't a cure and not without side effects, so we are running toward a cure for her and for everyone in the CF community, especially those who are unable to take this medication because of side effects or insurance issues. 

We are confident CF will be cured within Naomi's life time as they are so close to identifying the cure and your contribution will help make history when CF will instead stand for Cure Found. 

With love, 
That Staats Family