Amanda Ferree
By now I'm sure you've heard my story; how myself and my family's lives were turned upside down in March 2016 when Miles was born with Cystic Fibrosis. When he was born I was told the average life expectancy was mid-thirties. What a crazy thing to wrap my head around. I had a perfectly healthy 3.5 year old at home and a newborn that might not live past the age I was now.
The first few years of Miles life were filled with reminders of how difficult Cystic Fibrosis could be. We started out with a 9 week stay in the NICU, including 2 surgeries, one only hours after he was born. We were in and out of the hospital for GI issues, with 5 admissions before the age of 2. Every step forward came with more treatment and more challenges, until something amazing happened.
In 2018, shortly after it was FDA approved for his age group, Miles started Trikafta. Within a month he had more energy and less illnesses. We were able to manage the disease at home with quarterly clinic visits rather than inpatient admissions. He started daycare, then elementary school, and after some time I began to think of him as a 'normal' kid.
In 2025 we've been fortunate enough to start Alyftrek. So far he continues to improve even more! He's recently gained enough weight on his own that we no longer need to do supplemental nutrition overnight. His lung function is doing great and we have been able to cut out daily nebulizer treatments. He continues to love dance- taking 4 hours of classes a week; he is keeping up with his peers in ways I never imagined.
In his 9 years of life, the overall average life expectancy of a Cystic Fibrosis patient has increase to their 60s- but it's still not enough. Not everyone who has Cystic Fibrosis is eligible for these life changing meds due to their mutation or side-effects. There are still people dying way too young. And there are many that struggle to afford the costs of these medications; having to make unimaginable choices between paying for their medications or paying for necessities such as food, transportation, or housing. While Miles' story has been one of joy, I can't forget those who are still suffering.
The Cystic Fibrosis Foundation continues to be and advocate for all those with Cystic Fibrosis through medical research funding, peer to peer mentoring, social advocacy, and so much more. I know I make an ask for donations every year- but your contributions really do count!
Remember all your donations are tax deductible. The CFF is an amazing charity with a sound track records of financial responsibility and actual results. I appreciate every dollar we raise.
Miles for Miles has raised over $65,000 for CFF since we started. I'm so thankful for the support of my family and friends. Know that you are part of the reason Miles is doing so well!
The first few years of Miles life were filled with reminders of how difficult Cystic Fibrosis could be. We started out with a 9 week stay in the NICU, including 2 surgeries, one only hours after he was born. We were in and out of the hospital for GI issues, with 5 admissions before the age of 2. Every step forward came with more treatment and more challenges, until something amazing happened.
In 2018, shortly after it was FDA approved for his age group, Miles started Trikafta. Within a month he had more energy and less illnesses. We were able to manage the disease at home with quarterly clinic visits rather than inpatient admissions. He started daycare, then elementary school, and after some time I began to think of him as a 'normal' kid.
In 2025 we've been fortunate enough to start Alyftrek. So far he continues to improve even more! He's recently gained enough weight on his own that we no longer need to do supplemental nutrition overnight. His lung function is doing great and we have been able to cut out daily nebulizer treatments. He continues to love dance- taking 4 hours of classes a week; he is keeping up with his peers in ways I never imagined.
In his 9 years of life, the overall average life expectancy of a Cystic Fibrosis patient has increase to their 60s- but it's still not enough. Not everyone who has Cystic Fibrosis is eligible for these life changing meds due to their mutation or side-effects. There are still people dying way too young. And there are many that struggle to afford the costs of these medications; having to make unimaginable choices between paying for their medications or paying for necessities such as food, transportation, or housing. While Miles' story has been one of joy, I can't forget those who are still suffering.
The Cystic Fibrosis Foundation continues to be and advocate for all those with Cystic Fibrosis through medical research funding, peer to peer mentoring, social advocacy, and so much more. I know I make an ask for donations every year- but your contributions really do count!
Remember all your donations are tax deductible. The CFF is an amazing charity with a sound track records of financial responsibility and actual results. I appreciate every dollar we raise.
Miles for Miles has raised over $65,000 for CFF since we started. I'm so thankful for the support of my family and friends. Know that you are part of the reason Miles is doing so well!
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