Luca's Light

**2024 update:

​Luca's had a great year!  Turning two years old in October, he was introduced to what is called a life-changing drug, Trikafta.  Slowly being introduced to the drug to make sure Luca's body can tolerate it well, things seem to be going well.  The hope is that being on a drug like Trikafta, Luca will have less infections throughout his life that cause long term harm.  And we think it's working already!  Luca has had a fairly healthy winter so far through cold and flu season.  We contribute at least some of that to being able to take this new drug.

Unfortunately, this new drug does not work for everyone with CF..whether it be because their body cannot handle it or it just doesn't treat their specific CF gene mutations.  This is why it's so important to keep fighting to find a cure.  There are still many people with CF that do not have the benefit of being able to take drugs like Trikafta to help treat their symptoms.  Although Trikafta really is a life changing drug...it doesn't cure the disease.  Which is why we must not stop fighting to find a cure, until it's done!

Luca's story

Luca entered this world with quite a bang, bringing all sorts of fun and surprises.  Probably the biggest surprise he brought with him was our introduction to cystic fibrosis (CF). 

Luca was born at just 6 1/2 months along in the pregnancy, 10 weeks early, due to meconium ileus (a complication often occurring from CF where the intestines has a blockage).  Needing surgery just two days after he was born, Luca's long 5 month NICU stay at the Masonic Children's Hospital in Minneapolis was just beginning.  

Luca would end up needing 3 different surgeries, multiple operations needing anesthesia, a number of PICC lines placed, days of slowly working up on his feeds, and of course the g-tube placement.

This NICU stay was our first look into what life with CF would look like.  Multiple chest treatments per day, nebulizers, enzymes, syringes, oxygen levels, protective gear, cultures, etc...this was our new norm.

With the help of the amazing medical team at the NICU, the amazing surgery team, and of course the amazing CF care team; Luca was able to graduate from the NICU and head home!

Coming home from the NICU didn't mean his CF treatment stops.  CF is a lifelong disease.  He still needs two chest treatments per day, two nebulizer sessions per day, and takes about 30 pills per day.  It doesn't have to be this way if we can find a cure.

There have been great advancements towards finding a cure for CF since the disease was first identified, giving real promise to people with CF to live as close to a normal life as possible.  Many of these advancements have been directly funded from donations to this organization, the Cystic Fibrosis Foundation.  With your donation, you can be a part of finding a cure for the thousands of people who live with CF today.

Get more information on what cystic fibrosis is here:
https://www.cff.org/intro-cf/about-cystic-fibrosis