After I had to go on disability to focus on taking care of my health, I got involved with the CF community and volunteered with Community Voice. Little did I know it would help me when I needed it most.
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Despite my cystic fibrosis, my relationship with my daughter continues to grow stronger each time we are together. She doesn't care about what I can or can't do physically. She just loves me unconditionally.
A few years ago, it took one small staircase for me to realize that my health was on the decline. I look back now on that moment fondly, though, because it helped me learn to listen to my body.
Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.
For a new parent of a child with cystic fibrosis, it can be an enormous help to speak to other parents in the same situation. The support and shared knowledge offered by another mother made a huge impact on me when my newborn son was diagnosed with CF.
I have faced a lot of ignorance about my cystic fibrosis -- even from people whom I thought were my friends. I have learned not to take it personally. I just educate who I can and move on.
I never let my diagnosis of cystic fibrosis deter me from my dream of becoming a mother. I persevered despite the naysayers and, today, I have a beautiful son.
In 2020, I went from having almost no knowledge about cystic fibrosis to the shocking revelation that I've actually been battling CF my entire life. At 53 years old, I'm still a work in progress, but I'm facing this new diagnosis head-on.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
I was heartbroken when I learned my baby would be born with cystic fibrosis. However, my son's CF care team changed my perspective and connected me with other mothers of children with CF who became lifelines of support for me.