By JILL MCNEAL
6 News Anchor/Reporter
KNOXVILLE (WATE) - It's the breakthrough thousands of people have been waiting decades for. The FDA has approved Kalydeco, the first drug to treat the cause of cystic fibrosis, a genetic disease that kills about half of patients before their 35th birthday. Right now, Kalydeco has only been approved to treat a small percentage of the CF population.
Tucker Jack, 3, looks and acts like any other child his age, but unlike his older sister Abby and his twin Caroline, twice a day he takes a breathing treatment and wears an oscillating jacket to break up the mucus that collects in his lungs.
"There are still a lot of unknowns because you don't know what course it's going to take. Different kids and adults are affected differently by the disease," said Tucker's father Rod.
Tucker was diagnosed with cystic fibrosis before birth, which his parents say gave them time to prepare.
"We learned about the effects of CF on the lungs and digestive system and that there are treatments to keep it under control," Rod said.
Tucker spent two months in the hospital after birth and had three surgeries, but since then, he's done well.
"The more active, the better. They want him breathing, running, playing and doing everything he can," Rod said.
The announcement of the first-ever drug approved to treat the cause of cystic fibrosis was big news in the Tucker house, even though it's intended for only four percent of patients and not Tucker.
"It's a huge breakthrough. We're all very excited. The whole CF community is excited, all the people who raised the money to develop these drugs. It's about $100 million to bring a drug to market," Rod said.
Clinical trials of Kalydeco, in combination with another drug, are currently underway for the rest of the CF population. Tucker's parents believe it will help him lead a normal life.
"He was born at a good time. 20 years ago there wasn't anything that he's taking right now," Rod said.
"Most of the kids didn't even make it to kindergarten back then," said Tucker's mother Jennifer.
Tucker's parents are hoping the new drug combo will be approved in the next two years. Right now, it's only being tested in patients 18 years and older.
