31 Days of CF: We Hope to See a Cure in Our Son’s Lifetime

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31 Days of CF

Photo courtesy of Kirsten Decembrino

Day 11 of 31

This is Kirsten Decembrino’s story:

This is Tripp. 

When he was 10 days old, we received the news that he has cystic fibrosis. He had just come out of his first surgery to remove an intestinal blockage (what we now know was meconium ileus) and our hearts were shattered.

Being a first-time parent is hard. Being a first-time parent to a child with cystic fibrosis is even harder. In 16 short months, Tripp has already endured a three-week NICU stay, a hospital admission for respiratory syncytial virus, a pseudomonas infection, and countless colds — all during a global pandemic. 

But, looking at him now, you would never know that he has gone through all these hard times. His goal in life is to make people smile and laugh. There is nothing that brings him more joy.

We still struggle every day with getting him to gain weight (something that is common in people with CF) but we hope that we can get him on the right track soon so he can keep those precious lungs protected. It is a constant battle to get as many calories as possible into his body — especially because he is an incredibly picky eater and very strong-willed. Thank God for chicken nuggets!

We also have the added stressor of Tripp’s dairy and egg allergies which make it hard to add calories to the foods he eats. Luckily, the CF community has been amazing in offering suggestions for ways to add calories to his diet. We couldn’t do it without all the support!

We have spent the last 16 months learning about this disease and all the amazing progress that has been made to treat the symptoms. Because of his amazing care team and the work that the CF Foundation has done, we are so incredibly hopeful for Tripp’s future.

Tripp is going to live a long, full, and happy life doing everything that he loves. We believe we will see a cure in his lifetime. It’s within reach!

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.