Christine Magee
Jameson’s Story:
Last year we welcomed our sweet baby boy! Jameson was diagnosed with CF when I was just 13 weeks pregnant.
CF is a complex disease, not all mutations present the same. Some are pathogenic, while others are benign. When we found out our carrier status, we were told that our mutation combo had with no quality of life, and no treatment available.
When our genetic counselor called to tell us this pregnancy was affected, something told me to look into our diagnosis again to see if there were any updates or options for us. Medication for CF is VERY new, and evolving every day. We discovered that our mutations had recently been approved for an effective treatment. We met with the genetic counselor the next day, who not only confirmed the treatment option, but also gave us more amazing news. There was another person recently added with our mutation combo, and he was a 70-year old man who had been asymptomatic his entire life. This meant that there could be others that we don’t know about, who are just fine. In just 18 months, we went from zero quality of life, to the possibility of being asymptomatic.
After some tough conversations and lots of tears, we knew this was the path we were supposed to take. We felt confident that, even if he was sick, at least we had treatment options available to us now. My entire pregnancy was full of anxiety, the impending ‘what if’s’ were enough to keep me from enjoying most of it, but somehow I knew he would be okay.
One year later, his prognosis has been considered “not disease presenting,” and no treatment is needed at this time. While we’re not completely in the clear, since CF is a progressive disease, for now he is healthy and thriving. 💜
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.
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.
Last year we welcomed our sweet baby boy! Jameson was diagnosed with CF when I was just 13 weeks pregnant.
CF is a complex disease, not all mutations present the same. Some are pathogenic, while others are benign. When we found out our carrier status, we were told that our mutation combo had with no quality of life, and no treatment available.
When our genetic counselor called to tell us this pregnancy was affected, something told me to look into our diagnosis again to see if there were any updates or options for us. Medication for CF is VERY new, and evolving every day. We discovered that our mutations had recently been approved for an effective treatment. We met with the genetic counselor the next day, who not only confirmed the treatment option, but also gave us more amazing news. There was another person recently added with our mutation combo, and he was a 70-year old man who had been asymptomatic his entire life. This meant that there could be others that we don’t know about, who are just fine. In just 18 months, we went from zero quality of life, to the possibility of being asymptomatic.
After some tough conversations and lots of tears, we knew this was the path we were supposed to take. We felt confident that, even if he was sick, at least we had treatment options available to us now. My entire pregnancy was full of anxiety, the impending ‘what if’s’ were enough to keep me from enjoying most of it, but somehow I knew he would be okay.
One year later, his prognosis has been considered “not disease presenting,” and no treatment is needed at this time. While we’re not completely in the clear, since CF is a progressive disease, for now he is healthy and thriving. 💜
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.
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.
Comments