12-year-old shares his story of living with Cystic Fibrosis

South Florida boy hopes to help find cure for chronic disease

Published On: Jun 02 2013 07:48:57 PM EDT   Updated On: Jun 03 2013 06:20:00 AM EDT
MIAMI LAKES, Fla. -

About 30,000 children and adults in the United States are affected by a chronic disease that can be both life altering and life threatening: Cystic Fibrosis. 

Twelve-year-old Danny Quesada of Miami Lakes, Florida has a passion for running.

"I like how it feels," he said.

The effort is actually vital to Danny's health.  When he was 13-months-old, he was diagnosed with Cystic Fibrosis.

Iit was all new to us, we'd never heard of anybody with cystic fibrosis and never really been exposed to it so it was a big learning curve," said Danny's father, Mike Quesada.

Cystic Firbosis or C.F. is an inherited disease that affects the lungs and digestive system.

"These patients end up getting recurring infections and most of them happen in the lungs," explained Dr. Juan Martinez, a pediatric pulmonologist.

While there currently is no cure for C.F., advancements in treatment have dramatically improved life expectancy.  Danny sits in a chest compression vest twice a day and takes an alphabet soup of medications.

"All the medication that he takes right now is preventative," explained Danny's dad.  "It can't reverse C.F.,  it's to prevent his lungs from scarring  and from deteriorating."

C.F. patients also need to eat a diet high in fat and calories.

"The thing with C.F. is they have higher metabolic demands so they need those extra calories to overcome that," said Martinez.

And, they need to push themselves physically.  Danny now runs, not just for his own health, but to raise funds for C.F. research in the hopes of finding a cure.

"I can do what a normal kid can do but I have to do something if I can't breath I have to take an aerosol or take a break for a while," said Danny.

If both parents have the autosomal recessive gene for Cystic Fibrosis, each pregnancy carries a 25 percent risk of producing a child with C.F.  There is a prenatal test to check for the abnormality.