My Great Strides Story
Amanda Stromeyer
Amanda Stromeyer
I'm Amanda, Avery's mom. Avery was diagnosed with CF at only 9 days new and it was a diagnosis that no one expected. We have no known family history, and I had an uncomplicated pregnancy. She was not sent to the NICU after birth and although small, was doing well. My life shattered (so I thought) with the potential diagnosis.
After a sweat test, the diagnosis was confirmed, and we started to follow the Tulane cystic fibrosis clinic which was the only one in south Louisiana. It has since been changed to CHNOLA Cystic Fibrosis clinic.
During a clinic visit, Avery will see a respiratory therapist to have pulmonary function tests completed; nutritionist; social worker; psychologist; and the pulmonologist. A clinic visit will take nearly 2-3 hours, occurring every 3 months, but this ensures that Avery continues to do with her therapies and CF management. I am so thankfully that she has had a (rather) uncomplicated course so far.
When she was born, the average life expectancy of someone with CF was 35, but now only 6 years later, it has risen to 50+ and this is because of the phenomenal research and advancements in treatments which is funded by your generous donations!
Although we have greatly improved in the treatments and advanced lifestyle of those with CF, we will not stop until a CURE is found.
I can only imagine the day when Avery is walked down the aisle to her soon to be husband or the day when we are all anxiously awaiting her son/daughter to arrive-I know we will see this day because of your continued support to fund further research!
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.
After a sweat test, the diagnosis was confirmed, and we started to follow the Tulane cystic fibrosis clinic which was the only one in south Louisiana. It has since been changed to CHNOLA Cystic Fibrosis clinic.
During a clinic visit, Avery will see a respiratory therapist to have pulmonary function tests completed; nutritionist; social worker; psychologist; and the pulmonologist. A clinic visit will take nearly 2-3 hours, occurring every 3 months, but this ensures that Avery continues to do with her therapies and CF management. I am so thankfully that she has had a (rather) uncomplicated course so far.
When she was born, the average life expectancy of someone with CF was 35, but now only 6 years later, it has risen to 50+ and this is because of the phenomenal research and advancements in treatments which is funded by your generous donations!
Although we have greatly improved in the treatments and advanced lifestyle of those with CF, we will not stop until a CURE is found.
I can only imagine the day when Avery is walked down the aisle to her soon to be husband or the day when we are all anxiously awaiting her son/daughter to arrive-I know we will see this day because of your continued support to fund further research!
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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