SAN DIEGO -- Cystic fibrosis is not as well-known as AIDS or breast cancer but a local family is sharing how the disease has devastated them.

Friends and family said 23-year-old Jaimee Baker Renfrow lived every moment like it was her last.

"She was the brightest firefly in any person's jar," said Rony Renfrow, Jaimee’s husband. "I mean, one second with her is enough for a lifetime."

Renfrow said he was so taken with Jaimee's smile and personality that he wanted a lifetime with her, even though Jaimee had a rare, genetic lung disease known as cystic fibrosis.

"Just me really knowing that this was the person I was supposed to spend this time with, I really didn't have any reservations," said Renfrow.

He said cystic fibrosis was cruel to her.

"She would get so tired walking up three steps whereas a normal person could walk up the whole thing," said Renfrow.

It's the same for many of the 30,000 others in the United States whose lungs are clogged with thick and sticky mucus.

"Every night cystic fibrosis patients have to put on a jacket to shake their lungs, to shake this mucus out and then they cough it up," said

Dave Baker knew his niece Jaimee would not live to grow old and gray with her new husband. When she passed away three weeks ago, Baker made a promise.

"So we're putting on Jaimee's Run...It's a 5K run and walk," said Baker. "We want people when they hear 'cystic fibrosis' they know exactly what it is."

Baker said every step taken at Jaimee's Run this Saturday will be one step closer to raising money for a cure.

Jaimee's husband believes she would be proud.

"Every time we run, it's going to be another momentous occasion here to remember her," said Renfrow.