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Young Brothers Living with Cystic Fibrosis

With each breath, Michael DeFalco has already won. That’s because breathing doesn’t always come easy to the ten-year-old who has cystic fibrosis.

Michael and his eight-year-old brother Dylan both have the genetic disease that affects only 30,000 people in the U.S.

“Cystic fibrosis is a type of glue that you’re born with in your lungs and it makes it harder to breathe,” explains Michael.

“Its multifaceted and basically the body’s response to this mutated gene is it creates this thick, sticky mucus that causes a lot of problems,” said Lou DeFalco, the boys father and member of the Cystic Fibrosis Foundation. “So the mucus builds in the lungs, causes chronic lung problems, can cause loss of lung function over time. And it also impacts the digestive system, you know blocks the pancreas causes other gut issues, so it’s really this mucus that causes all the problems.”

To combat cystic fibrosis, or CF, the boys must do multiple hours of respiratory therapies each day and take several dozen pills a day to help them digest food.

“I recently estimated that they’ve probably had over a quarter of a million pills between the two of them so far in their lives, and 13,000 hours of respiratory therapies so far,” said Mary DeFalco, the boys mother.

But do they let all that slow them down?

“Never!” said Dylan.

“I don’t let it get in the way because I think I can do anything, even if I have CF,” added Michael.

In fact, the boys stay very active. Ten-year-old Michael is on a travel soccer team and plays basketball at the YMCA, and eight-year-old Dylan does competitive gymnastics. And both boys are on the Huntington Estates Swim Team.

“They’re both very athletic, which is good for their general health, and good for the lungs and you’d look at them and wouldn’t think there’d be anything different about them,” said Lou.

Beyond building endurance through sports, they’ve also been spreading awareness and raising funds – as the Huntington Estates Swim Team dedicated their annual coin wars competition to the Cystic Fibrosis Foundation this year in honor of the brothers.

“From the moment of diagnosis, our family has thrown ourselves into raising money, advocating, working to find a cure for our boys,” said Mary. “We believe that the science and the advancements are moving at warp speed for this disease, which gives us hope so we’re very motivated and to hear others in the community want to help means everything.”

Despite all of the challenges they face, the boys still jump head first into all life has to offer them.

Naperville News 17’s Evan Summers reports.

NOTE: Pictures were provided courtesy of the DeFalco family.


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