Lexington, Ky. (WKYT)- Imagine being born with a disease where you might only live to be in your thirties. It's a reality for nearly 30,000 children and adults in this country battling cystic fibrosis.
WKYT's Amber Philpott introduces a Lexington teenager and her family fighting back by raising hundreds of thousands of dollars to find a cure.
Cell phone in hand, 15-year-old Grae Chambers is not often separated from what she considers a social lifeline.
"Most of the time I try to be with my friends as much as I can," said Grae Chambers.
By all accounts Grae is a happy healthy Lexington teenager, until she hooks up her other lifeline.
"So when I wake up I start with my vest," said Grae Chambers.
For 20 minutes, three times a day Grae must hook herself up as part of a life saving routine.
"Then while I do this, I do a breathing treatment," said Grae Chambers.
Grae has cystic fibrosis, a genetic disorder that affects the lungs and digestive system.
Diagnosed at just five-months-old, it was devastating news to her parents.
"Right now the life expectancy is 39 and that is not nearly enough," said Melissa Chambers.
Cystic Fibrosis causes mucus to build up in Grae's lungs. Her treatments help to release it combined with a daily regiment of more than dozen pills.
Modern advances in medicine are helping cf patients, including a new trial drug Grae has been taking.
"With the newer medications, this new class of drugs is actually taking care of the underlying cause of cystic fibrosis. These children are going to have a normal life expectancy, " said Melissa Chambers.
To make sure more advances are made, Grae and her family have spent the last fifteen years raising critical dollars needed for research.
"As a family we have raised over a $1 million," said Grae Chambers.
All of that money has come from an annual walk and their Splash and Bash event which will be held this weekend in Lexington.
"It has taken friends, family and strangers and all kinds of people to raise that money," said Melissa Chambers.
The Chambers are just one family fighting cystic fibrosis, but the hope is that no one will have to do it.
"My goal is definitely to find a cure for every gene of cystic fibrosis, every type of cf," said Grae Chambers.
This weekend the Chambers family will host their annual Seafood Splash and Bash at Malone's Banquet Hall in Lexington on Tates Creek Road. The night benefits the Cystic Fibrosis Foundation, for more on the event and cystic fibrosis click on the links on the page.