Dear Moms of Children With CF

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.

March 12, 2024 | 4 min read
A selfie of Bianca and her son
Bianca Maldonado-Dequin
Bianca smiling with her husband, daughter, and son who is wearing a graduation robe and cap.

Dear Fellow CF Mom, 

There are so many things I want to say to you. I see you. I know you. You’re not alone. Even if we’ve never met, know that I’m praying for you. The things you deal with — the insurance BS (yes, I said BS), the clinic day anxiety, those endless prior authorizations, and that chronic worry even when everything is "fine" — I get it.  

When I first heard the words “cystic fibrosis,” it felt like I was being thrown into the deep end without knowing how to swim. The diagnosis was a blow that left my husband and me stunned, scared, and hearing words like “life expectancy” and “complications” — words that no parent should ever have to hear. Those early years? Pure survival mode. The hospital became too familiar and everything centered around making sure our son, Esteban, had all the medicines, all the appointments, all the treatments — just to have our family and friends say, “But he looks so normal.” Their comments weren’t meant to be hurtful, but it just felt like nobody really understood us.

But then, something incredible happened. In the midst of all that fear and fog, we found people who did understand — the CF community.
 

A group of the strongest, most compassionate people I’ve ever met. From connecting with others at CF Foundation Cares, Tomorrow’s Leaders, and fundraising events, to sharing our raw, unedited truths — all while laughing and crying — this community holds each other up in ways I didn’t realize I needed. This unexpected family has been something I never thought I’d find myself in, but I am so grateful for it.

I was telling a young mom the other day how different it was even a few years ago. My son’s health has dramatically improved since starting Trikafta® — like night and day. And now with continued progress, we’re standing on the cusp of a cure. Miracles are happening before our eyes, all thanks to advocacy and breakthroughs in research. Our community’s future is so bright, and it’s all because of those who’ve carried the torch before us.

I heard it straight from a pulmonologist — kids born with CF today have a chance at a completely different life than people with CF have previously known — where hospital visits are few and far between and they can grow up truly without limits. That thought alone is enough to bring me to my knees in praise and then get on my feet to advocate. But while we're all cheering for the game-changer that is Trikafta, let's not forget about the 10% of our CF family who can't use it. It's terrible knowing there's this amazing progress out there that not everyone can benefit from. It just goes to show that our fight is not done. We've got to keep rallying and fundraising for those breakthroughs until they include everyone. 

Now is not the time to take our foot off the gas. Let’s hold on to the gratitude for where we are today while keeping our eyes fixed on our real goal. We’re closer than ever to turning CF into “cure found!” I’m envisioning the day when we can all celebrate together! Our collective voice, our shared stories, and our unbreakable spirit are driving this hope. 

So, to you, my fellow CF moms, please hear me. Your fears, your hopes, and your dreams are seen. They’re felt and understood deeply. Let’s continue to lean on each other, to ask for help on those crazy days, and to connect with others, even when we’d rather be isolated. Because in this community, no one is alone. Together, we’re writing a new story for CF — one filled with hope, love, and the kind of strength that only comes from facing this disease side by side. 

With so much love,
A Fellow CF Mom

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Caring for a Child With CF | Social Life and Relationships
A selfie of Bianca and her son

Bianca is mom to Esteban, an adult with cystic fibrosis. She has served as Outreach Chair on the CF Foundation's South Texas chapter board and was selected to be on the Leadership Council in 2022. She has just started building a community online to support and empower moms of kids with special health needs, such as CF, autism, Down Syndrome and others. She lives in San Antonio with her husband Cedric, daughter Maya, son Esteban, and loving dog, Leo.

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