31 Days of CF: Learning Resilience After My Son’s Diagnosis
Day 18 of 31
This is Bianca Maldonado-Dequin’s story:
My son, Esteban, was diagnosed with cystic fibrosis at birth 16 years ago. The doctor at the time talked about life expectancy, complications with this disease, multiple medications, and daily treatments. I remember my husband and I just sitting there, completely quiet and stunned.
Esteban stayed in the hospital for three months in the intensive care unit. My husband and I were overwhelmed and, most of all, scared. No parent should ever have to hear about their child’s “life expectancy.” We were terrified.
We’ve come to experience a lot of things with this disease. Hospital rooms. Nights with (seemingly endless) coughing. Huge medical bills. Fear that feels like it’s swallowing you…
The flip side is we’ve seen how strong our beautiful boy can be. We’ve met amazing doctors and nurses. I have a special place in my heart for nurses. I’ve learned resilience and how to live with gratitude. I’ve become part of a community: a community we never thought we’d be a part of but that has turned out to be a godsend.
I’ve had some of the deepest connections with CF moms, in particular when hosting CF Cares events online. Right now, our community is experiencing exponential miracles thanks to fundraising and research! I’m incredibly grateful for the people who advocated long before me. Their legacy is in every person with CF who’s thriving, including my son.
And Trikafta!! Trikafta is literally changing people’s lives and I’m so hopeful for the future! We are so close to a cure and get that much closer every time we spread awareness, fundraise, and donate. I’m hopeful the cure for CF is coming and I can’t wait to celebrate on that day with our community!
Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series.