We will never forget hearing at August's one week check up "Did anyone reach out to you about August's cystic fibrosis mutation that was flagged in his newborn screening?" 

We were so surprised to hear those words - neither of us knew we were carriers for Cystic Fibrosis. Fast forward to April of 2024, after several weeks of unknowns, sweat tests and several genetic tests between the three of us, we found out August inherited 2 Cystic Fibrosis causing mutations. 

After learning more about his variations of CF, we learned that August's combination of mutations presents very differently than other typical CF combinations. While having two mutations of CF most often codes for having Cystic Fibrosis and all the symptoms of it, his 5t and A445E mutation combination is different. His 5t mutation makes it where August may develop Cystic Fibrosis at any moment in his life, and there is nothing we can do to prevent it. 

His official diagnosis was CRMS (CFTR related metabolic syndrome.) Because some people may have it and never know due to being asymptomatic their whole lives, it is not highly studied. Therefore, it is not understood yet what may trigger the CF symptoms to develop or why.

This is why we are fundraising and walking. To support the research for CRMS and CF, and to support those who walk different paths than Auggie, for those with CF or have a loved one with CF. 

We have an amazing team at Childrens Minneapolis, and Auggie’s pulmonologist has been so supportive, reassuring, and a blessing to our family in navigating the unknown. For them we are eternally grateful.