I began fundraising and raising CF awareness soon after my son, Aidan, was diagnosed as a baby. After years of successful fundraiser walks, Aidan asked me to stop — opening my eyes to the difference between being a mom of someone with CF and being the person who is living with CF.
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Raising three kids in daycare often involves runny noses and mystery stains. As a mom with CF, I’ve figured out how to balance our daily lives with keeping me healthy and daycare-germ free.
Dance was my life, but I had to give it up when my health was in decline. I then found a new way to express my creativity through poetry.
When my daughter was diagnosed with cystic fibrosis, I found it difficult to explain this disease to my parents in Spanish, and I also felt alone in my rural community. That is why I think it is important to bring CF awareness to the Hispanic community.
I have always been very interested in science, eventually leading to my career as a genomic scientist. My curiosity helped me cope with the uncertainties of cystic fibrosis, leading me to many academic, professional, and personal opportunities that gave me a more expansive view of how my different roles and identities can build upon one another.
After traveling to over 20 countries, I’ve learned that cystic fibrosis doesn’t have to hold me back from experiencing life abroad. Here are some tips for traveling with CF.
For so long, my identify was defined by beating the odds and achieving a successful career despite having CF. But recently, health complications have forced me to create a new identity focused on self-care. With the help of my support system, I am slowly adapting to this new chapter.
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
The physical and emotional toll of CF can sometimes make me feel isolated from my peers. But I’ve learned being vulnerable about my struggles can create stronger relationships that make me feel supported and loved.
For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.