Marissa Johnson

Hello my name is Kohen Hildreth. I’m a 6 year old boy who was diagnosed with Cystic Fibrosis. My parents found out that I have this rare disease when I was just 10 days old. First diagnosed by my newborn screen and confirmed by a sweat test. My DAILY treatments as of right now are 25-30 Enzyme pills a day, trikafta pills twice a day, 2 kinds of Vitamins, an acid reducer I have to take twice a day, lots of supplements for helping my stomach since I have a hard time digesting and properly breaking down my food, 3 breathing treatments twice a day (or more when I’m sick) with Albuterol a.m. and p.m, sodium chloride, pulmozyme and TOBI. I do this at the same time as my Chest physiotherapy with my vest twice a day which breaks up the mucus in my airways. I have to take the enzymes before every meal to properly absorb the nutrients from my food. The chest physiotherapy and breathing treatments are part of my airway clearance to keep my lungs working properly.

My journey living with Cystic Fibrosis has just begun and I need your help along the way!

Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes 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. The reproductive organs are also affected, making it highly unlikely for people with CF to have children. 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 considered an “orphan disease”; meaning it has not been adopted by the pharmaceutical industry. Because of this, it provides little financial incentive for the private sector to make and market new medications to treat or prevent. So this means that the government does not fund any research to help find a cure for this horrible disease. All of it is done through The Cystic Fibrosis Foundation and fundraising events just like this one!

ANY/ALL DONATIONS ARE MUCH APPRECIATED!
Thank you all for reading my story!