Sprinkle Family
The year Caleb was born, life expectancy for a person with cystic fibrosis was only 38, and kids were still dying in their teens pretty regularly. Now life expectancy extends into the mid 60's. In 2010 less than half of the 30,000 people with CF in the United States were over the age of 18. Now there are more like 40,000 people and the majority (60%) are adults. Long hospital stays used to be the norm; now they are the exception to the rule. Lung transplants have gone way down while birth rates have gone way up. Things are definitely moving in the right direction!
As I sat holding my newborn at that first CF clinic appointment, I wondered what his future would hold. I was filled with fear - justifiable given all I had recently read on the internet. I wondered if daycare would be safe, if he would be able to go to school, if life would ever feel "normal" to him. I wondered if he would go to college, get married, have kids of his own. I wondered if he would outlive me. Now, 16 years later, I marvel and just how far we've come.
The medical miracles we have seen in Caleb's lifetime were just getting started when he was born in 2010. A new kind of treatment was in development that would "fix" the genetic defect at the cellular level, theoretically improving overall function systemically. Caleb began his first modulator (Kalydeco) at the age of 5 and switched over to a second-generation modulator (Trikafta) at 11. These meds have been game-changers for the CF community, and they were only possible through the efforts of the CF Foundation and because of donors like YOU.
We still have a long way to go. Even though the current modulators cover about 95% of the CF population, they are not perfect. They come with a host of side effects, some we are only just learning about. And then there's the 5% of people for whom no modulators exist. The longer people with CF live, the more problems emerge (like diabetes and liver disease). More research is needed! WE STILL NEED A CURE!
If you've made it this far, I hope you'll take it one more step - come out and walk with our Great Strides team on May 16th! Great Strides is my favorite day of the year because it is a powerful reminder of the SUPPORT and HOPE our community feels when you show up for us. This journey is long and often lonely - Great Strides reminds us we're not alone. Hope to see you there!
Until it's done...
As I sat holding my newborn at that first CF clinic appointment, I wondered what his future would hold. I was filled with fear - justifiable given all I had recently read on the internet. I wondered if daycare would be safe, if he would be able to go to school, if life would ever feel "normal" to him. I wondered if he would go to college, get married, have kids of his own. I wondered if he would outlive me. Now, 16 years later, I marvel and just how far we've come.
The medical miracles we have seen in Caleb's lifetime were just getting started when he was born in 2010. A new kind of treatment was in development that would "fix" the genetic defect at the cellular level, theoretically improving overall function systemically. Caleb began his first modulator (Kalydeco) at the age of 5 and switched over to a second-generation modulator (Trikafta) at 11. These meds have been game-changers for the CF community, and they were only possible through the efforts of the CF Foundation and because of donors like YOU.
We still have a long way to go. Even though the current modulators cover about 95% of the CF population, they are not perfect. They come with a host of side effects, some we are only just learning about. And then there's the 5% of people for whom no modulators exist. The longer people with CF live, the more problems emerge (like diabetes and liver disease). More research is needed! WE STILL NEED A CURE!
If you've made it this far, I hope you'll take it one more step - come out and walk with our Great Strides team on May 16th! Great Strides is my favorite day of the year because it is a powerful reminder of the SUPPORT and HOPE our community feels when you show up for us. This journey is long and often lonely - Great Strides reminds us we're not alone. Hope to see you there!
Until it's done...
JAN
22
22
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