Ethan's Force

We often hear “ He doesn’t look sick. “ and if you ask him… Well, he will likely tell you that he’s not feeling sick. 

Recently, we are noticing the effects of Cystic Fibrosis more and more and are trying to give Ethan the best quality of life we can. We try to limit exposure to people that are sick and have frequently cancelled plans due to sickness. We've spent more time than we'd like inpatient this year and are hoping that the next 365 days is full of HEALTH, love, joy and a CURE for CYSTIC FIBROSIS. 

Why? Because he was born with this disease and he has been battling the progressive terminal affects of it since birth. He doesn’t know any differently. This is a kid, who functions daily with his organs ( lungs, pancreas, liver ) consistently trying to fail him. He doesn’t know what it’s like to live a life without hours of daily treatments and therapies or to not take daily endless amounts of medications.

Ethan is one of 40,000 living with cystic fibrosis in the United States, there is an estimated 105,000 people that have been diagnosed with CF across 94 countries. Crazily enough, it’s still considered a Rare Genetic Disease. 

I share all of this to bring awareness. Without it there would be no support and in turn funding would be lost, as well as our Hope. I refuse to allow that to happen. 

Below I’ve shared a little overview of what this disease does to the body. 

To put all of this in perspective for each of you that are unaware. 40 years ago, the majority of children with CF didn’t get the opportunity to live long enough to attend elementary school. We now live in a time where they have a fighting chance to live into adulthood. As the Median life expectancy (meaning nearly half of those with living with CF) is now around 50 years old. 

So hope does exist and our family will forever cling to it. 

In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky.

In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications. For this reason, avoiding germs is a top concern for people with CF.

In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body absorb food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. In men, CF can affect their ability to have children. 

We enjoy everyday and try not to focus on the "what ifs".

Join our team and help add tomorrows! By becoming a member and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.