Faulhabers' Fighters

Join our team and help add tomorrows!

As you may know our daughter Evelyn was diagnosed with Cystic Fibrosis through pre-natal bloodwork and amniocentesis.  This makes her life a little bit different that you and me.  With the two mutations Evelyn has, she was lucky enough to qualify for Kalydeco at 8 months old. This past year she started taking the next wonder drug Trikafta, which has been changing the lives of many people living with CF.  Every morning and night she must take her medicine which she takes like a champ.

The newest member of the Faulhaber crew, Leander, was also born in November with CF like Evie but was lucky enough to start Kalydeco when he was 2 months old. 

Every day the kids do their chest PT which for Evie consists of wearing a vibration vest for 30 minutes. If anyone wants to see her "Flower power" vest Evie is very proud to show it off! Leander does 30 minutes of manual percussion the same as Evie when she was little. If they have any type of respiratory illness then PT will need to be done twice a day or more to help break and expel any mucus in their lungs. Illnesses also mean Evie more often goes on liquid anti-biotics which she gladly takes with the help of a "Target" prize bag.  Evie is extremely diligent with handwashing and sanitizing before loving on her baby bother which has been great in keeping him largely germ free this winter.

But through all of this, they don’t miss a beat.  Evie’s favorite things to do right now are dancing, fighting "bad guys," bossing everyone around, playing with her cousins, crafting, and gymnastics.

Through fundraising like this, amazing scientific advancements on new drugs have been developed! For the first time, the median predicted life expectancy for a child born with CF today has reached 53 years, up 15 years from just a decade ago.  Think about that, I'm 39 years old, that was the median life expectancy only 10 years ago for a child born with CF.  Through your donations and fantastic advancements in medical treatments kids born with CF are living longer healthier lives.  There are still people with certain CF mutations who are waiting for their breakthrough drug.  Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do.

Abbey and I can't believe the support we've received from friends and family over the last 6 years.  It's really inspiring to see how everyone has rallied around this great cause to find a cure.

Let's keep the momentum going in 2024.

With much gratitude,

Tim, Abbey, Evelyn, and Leander Faulhaber