31 Days of CF: A Mother’s Perspective

31 Days of CF: A Mother’s Perspective
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Photo courtesy of Tonya Lantis

Day 4 of 31

This is Tonya Lantis’s story:

Hello! My daughter, Amelia, came into this world at a crazy but perfect time for us. If you remember how October 2020 was going for the world, you know what I mean…

While pregnant with Amelia, I had testing done that revealed I was a carrier for cystic fibrosis. That led to Dad being tested, and he also came back as a carrier. We didn’t think much of it at the time since our firstborn did not have CF. Since we weren’t very educated about the disease, we didn’t realize her chances of having it were 1 in 4. 

Amelia’s birth was semi-smooth; nothing too alarming. In those first days, she was doing great. However, the doctors were concerned with her weight as it had begun dropping. Eight days later, we were at her pediatrician’s for a follow-up and they shared the results of her newborn screening

I remember having tunnel vision when the doctor sat down. It felt like our world was flipped upside-down and the unknown was terrifying. The next day, we met a pulmonologist, dietitians, social workers, and soon… the entire team. 

It was tough, but here we are six months later — thriving and feeling much more comfortable with all we know. I made the personal choice to leave my job and care for Amelia myself at home. 

Amelia currently takes three Creon (enzymes) per feeding, gets two physio treatments daily, takes a vitamin supplement daily, and gets her high-calorie formula/salt supplement. At times it can feel like a lot, but she’s doing amazing!

We’re grateful for our team at our children’s hospital and the Cystic Fibrosis Foundation. They encouraged us to be positive and explained how far treatments have come for CF. We have a fighter and there’s plenty more like Amelia. The CF community will not stop until CF stands for Cure Found!

From a mother’s perspective, I say just breathe and enjoy your little one. CF is just a part of Amelia’s story. She’s a smiley little girl who loves going on walks in the stroller and loves attention even more!

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. 

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