My CF Climb Story
Ilana Gonzalez Berger
Fundraising for Philadelphia CF Climb
Ilana Gonzalez Berger
When I was born I had CF. From that time to age 9, I suffered without knowing the true cause. When I was 9, weighting 47 lbs, I was diagnosed with CF.
I was shown how hard my life would now be as I attempted this incredible act of perseverance and determination to fight against the trajectory at that time of death at an early age. Yearly hospitalizations due to declining lung function and infections, daily antibiotics to attempt to prevent new infections, hours of lung and nebulizer treatments to kick the junk from my lungs that I could not clear on my own, thousands of calories a day eaten in an attempt to maintain my weight which never was much to begin with, coughing fits every day multiple times a day, while in school, while at soccer practice, while sleeping, while breathing.
With the help of medical providers, research and development, and those like you who funded the research, I surpassed the ages and milestones they thought I would not. Life was still hard, the balancing act still strenuous, but hope was still strong.
2017 I was able to take trikafta during a double blind study, and to my surprise I was actually on the medication which ACTUALLY made a difference.
2025, as I plan for the birth of my own child, I think about my life and how it’s changed. I have not been hospitalized since 2017, I don’t HAVE to do hours of treatments a day, my lung function is holding steady. I still have CF and I still have difficulties (diabetes as a result of my CF, lung damage that is irreversible, etc.), but I’m here.
I think of those who are NOT able to benefit from Trikafta because it is not a one drug for all. CF is a complex condition and some can’t stand the side effects that Trikafta brings or their genotype isn’t improved by the mechanics of the medication. These individuals need as much help as I needed back then just to live everyday and I hope that I don’t give up on them JUST because I am okay. They matter just as much as I did before 2017.
For them, I ask you, again, please help what you can. It makes a difference. I know because it did for me.
Tomorrow is the climb, I am climbing finally, not for myself, but for all of them.
I was shown how hard my life would now be as I attempted this incredible act of perseverance and determination to fight against the trajectory at that time of death at an early age. Yearly hospitalizations due to declining lung function and infections, daily antibiotics to attempt to prevent new infections, hours of lung and nebulizer treatments to kick the junk from my lungs that I could not clear on my own, thousands of calories a day eaten in an attempt to maintain my weight which never was much to begin with, coughing fits every day multiple times a day, while in school, while at soccer practice, while sleeping, while breathing.
With the help of medical providers, research and development, and those like you who funded the research, I surpassed the ages and milestones they thought I would not. Life was still hard, the balancing act still strenuous, but hope was still strong.
2017 I was able to take trikafta during a double blind study, and to my surprise I was actually on the medication which ACTUALLY made a difference.
2025, as I plan for the birth of my own child, I think about my life and how it’s changed. I have not been hospitalized since 2017, I don’t HAVE to do hours of treatments a day, my lung function is holding steady. I still have CF and I still have difficulties (diabetes as a result of my CF, lung damage that is irreversible, etc.), but I’m here.
I think of those who are NOT able to benefit from Trikafta because it is not a one drug for all. CF is a complex condition and some can’t stand the side effects that Trikafta brings or their genotype isn’t improved by the mechanics of the medication. These individuals need as much help as I needed back then just to live everyday and I hope that I don’t give up on them JUST because I am okay. They matter just as much as I did before 2017.
For them, I ask you, again, please help what you can. It makes a difference. I know because it did for me.
Tomorrow is the climb, I am climbing finally, not for myself, but for all of them.
Comments