Our Great Strides Story
Liz Zellar
In April of 2024, after much testing, we found out August had 2 Cystic Fibrosis causing mutations. After learning more about his variations of CF, we learned that Augusts combination of mutations presents very differently than other CF combinations. While having 2 mutations of CF most often codes for having Cystic Fibrosis, his 5t 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 if it shows. Currently, August has not shown any symptoms of CF which we are eternally grateful for, and we hope to never see one.
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 us, for those with CF or have a loved one with CF.
We have an amazing team at Childrens Minneapolis, and Augusts pulmonologist has been so supportive, reassuring, and a blessing to our family in navigating the unknown. For them we are eternally grateful.
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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