Teresa Luse
My nephew, Matt Pozsgai, was diagnosed with CF at the age of 4 months old. 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.
Until Matt was born we had no idea that our family carried the CF gene. Through genetic testing I found out that I was a carrier of the CF gene. Two of my daughters have also tested positive for carrying the gene. My other daughter has not tested yet. If a person is a carrier there is a 50 percent chance they will pass on the gene with a mutation to their child. And it takes both parents to pass on a defective gene for the child to have CF. Many of you may actually have this gene and not know it. That was the case with both of Matt's parents.
While all of our family's lives changed drastically the day Matt was diagnosed, Matt thrived, once he got used to the daily series of medications and chest PT's. However, when Matt was entering High School he developed a Microbacterium infection in his lungs. This sent Matt's health on a downward spiral. He was in the hospital for two weeks at a time every couple of weeks. He rarely was able to attend in person learning. Matt's daily lung functions dropped to 50-60%. Every little cold became life-threatening. Then the miracle drug Trikafta became available. Today, Matt's lung function is up in the high 70's. He has been able to get a job, move out on his own, and plan for a future. While Trikafta has been a life changing drug, it is not a cure. More importantly, it does not help all CF patients.
Cystic Fibrosis has many gene variations and there are some children who do not benefit from Trikafta. They are still living very sick lives, with a short life span. This is why we continue to hold the Vancouver Great Strides Walk. Our dream is that one day no child will have to live the life of endless medications, hospital stays, and a life with no future.
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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