My Great Strides Story
Caroline Lemay
Caroline LeMay
There is currently no cure for cystic fibrosis and I’m walking to help change that reality, our son's life depends on it. We are so fortunate to have the best team of doctors and nurses at Children's Hospital, as well as access to the modulator Trikafta.
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.
As of right now, Russell's CF presents itself the most in his pancreas. He is severely pancreatic insufficient, meaning he can not process foods with fats without having enzymes paired with meals or some snacks. Some people are have been lucky enough to see Trikafta help benefit the pancreas but we have not yet. Russell's numbers have fluctuated but staying hopeful that we may see a change.
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.
After starting Trikafta, Russell's liver enzymes were slightly elevated. We continue to monitor his levels at each clinic visit. They have stayed this way for each blood draw. Most recently, he had an ultrasound that confirmed that his liver appears normal at this time. We will continue to monitor those levels.
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.
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.
As of right now, Russell's CF presents itself the most in his pancreas. He is severely pancreatic insufficient, meaning he can not process foods with fats without having enzymes paired with meals or some snacks. Some people are have been lucky enough to see Trikafta help benefit the pancreas but we have not yet. Russell's numbers have fluctuated but staying hopeful that we may see a change.
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.
After starting Trikafta, Russell's liver enzymes were slightly elevated. We continue to monitor his levels at each clinic visit. They have stayed this way for each blood draw. Most recently, he had an ultrasound that confirmed that his liver appears normal at this time. We will continue to monitor those levels.
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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