My Xtreme Hike Story
Cystic fibrosis is a life-shortening, genetic disease found in about 30,000 people in the U.S. that causes persistent lung infections and limits the ability to breathe over time.
I helped start and co-chair the DC Metro Xtreme Hike, because my daughter- Brynn (AKA Zilla) has cystic fibrosis- she is 11 years old and she was diagnosed at Birth.
I have been raising money to fight against Cystic Fibrosis for the past 9yrs. Typically, I describe the daily challenges in maintaining lung health, from my perspective. Last year, I wrote that Brynn doesn't let CF define her; she feels like a normal kid.
I was wrong -- that's not how she feels. So this time, I requested her help. I asked Zilla to describe any improvements to her daily life. She said:
"My friends understand CF better. They ask if I've taken my pills, because they care. And there've been innovations, with medications. But also, people are finding ways to make CF patients more comfortable. Like my vest: it's battery-charged, so I can move around, which makes me more tolerant of this disease.
It's a lifestyle that's hard to understand, and some don't want to. But those that do, want to make big changes. When I was younger, the focus was just on medications and testing my lung strength. But now, it's about quality of life. I take Trikafta, which helps my breathing, but it's mentally helpful, too. It's reassuring to think I may be getting a bit better.
I'm not expecting a cure... I mean, there isn't even a cure for cancer. But to know that people are trying to give us happier lives... that matters."
A few days later, Brynn's mood wasn't so rosy. She refused to do daily therapy, while I badgered her to get started. So I asked her to describe her frustration: What's it like, to be 11 years old, and living with CF?
"It's this thing that follows you around, all the time. There's never a break. CF is always lurking in my head, driving me crazy. Everyone's asking me to do this, and take that. You'll say, 'Why aren't you using your vest or nebulizer?' And that's along with the voice in my head, constantly yelling, 'Why didn't you do your treatment? Take your pills? Did you? Did you do it? Why not?'
When I don't do my treatment, I feel horrible. Guilted, by the voice I hear. But even when I do therapy, it's never enough. You're never done. Even when I feel good, it's still there. I'm so sick of doing therapy... I want to quit, but I can't."
Just last month, Brynn started taking a new medication called Trikafta. She reported feeling the effects, after the very first dose; her lungs feel clearer. According to her doctor, if she keeps improving, she might need less daily therapy in the future.
As for a cure, Brynn is right: It is a lofty goal. But not without merit. Please consider supporting the CF Foundation by donating to Xtreme Hike (this year, at Sky Meadows, Oct. 2nd.)
Contributions lead to tangible improvements. Just ask Brynn, the next time you see her!