Two-and-a-half-year-old Jude is a bundle of energy. But guarding his health takes enormous vigilance says his mom. Jude has cystic fibrosis, a genetic condition that causes his body to produce too much thick mucus.
It affects every function. He can't digest food well. So he takes enzymes to help his body absorb nutrients.
"Right now he has to eat about 2,000 calories a day," said mom, Pam.
And mucus clogs his lungs, making breathing a chore, and making him vulnerable to infection.
"He probably has a cold longer than most kids have it. Sometimes it's seven or eight weeks to get over a cold," said Pam.
Every day Jude must inhale a drug that works to thin the mucus in his lungs.
And his mom clears them with a technique called clapping. But eventually repeated lung infections will overwhelm him.
"And at that point, most kids go on daily antibiotics," said Pam.
That's why a new inhaled antibiotic called Cayston is so important. The FDA just approved the drug for kids age 7 and up.
According to Dr. Bonnie Ramsey, cystic fibrosis expert at Seattle Children's Research Institute, it provides a choice for patients whose bodies become resistant to the only other antibiotic available.
Just like Jude's current therapy, the new drug's development was funded by the nonprofit Cystic Fibrosis Foundation.
"The CF Foundation has decided they're not going to wait for the government to solve the problem. They're not going to wait for private industry to solve the problem," said Pam.
Fifty years ago children like Jude weren't expected to survive to grade school. Today he can look forward to living to his late thirties. And his future looks brighter as each new drug becomes available.
"He's going to have a much longer and healthier life because of the work of the Cystic Fibrosis Foundation," said Pam.
Experts say some drugs in the foundation's pipeline hold the promise of fixing the genetic flaw that causes the disease.
Cystic fibrosis affects about 30,000 people in the United States.
MORE INFORMATION
Cayston or call 1-877-7CAYSTON (877-722-9786)
