05/05/2014 12:20 pm ET Updated Jul 05, 2014

For Cystic Fibrosis Awareness Month, the Story of a Mother's Fight to Save Her Daughter's Life

If Cystic Fibrosis (CF) is wiped out in our lifetime, Liza Kramer will have had something to do with it. Kramer has been working toward a cure since her daughter Emily was diagnosed with the disease at six weeks.

CF is a progressive genetic disease primarily affecting the lungs and digestive system. It causes thick mucus to build up in the lungs, leading to life-threatening infections. Currently, there is no cure.

So what do you do when your baby girl is diagnosed with a fatal illness? Liza and husband Michael didn't want Emily's life to be defined by her disease. Yes, some things couldn't be avoided. Hours a day spent on treatments to improve Emily's lung function. And frequent hospitalizations when infections did arise. But they resisted the impulse to overprotect their child, encouraging her to enjoy parties, sports and sleepovers with her friends.

They wanted to give their daughter the gift of an ordinary childhood. At the same time, they meant to do whatever it took to help find a cure for CF before it killed her.

Since so few people have CF (just 30,000 nationwide) it doesn't pay for drug companies to fund research to find a cure. That research must be paid for by individuals, and by organizations like the CF Foundation. Life-enhancing breakthroughs have been made. Kids born with CF in the 1950s didn't live long enough to enter grade school. Now, the projected life expectancy for a person with CF is the late 30s.

Emily is 29.

Emily grew up happy and emotionally secure, the oldest of four kids, part of a strong and supportive family culture. For years, Liza and Michael and their children were my neighbors. When I dropped by, Emily was usually hanging with her pals, or out on the front lawn playing her flute. Often, though, she'd be up in her bedroom, sprawled across her mother's lap as Liza thumped on her back for hours to dislodge the gunk that threatened her ability to breathe.

Even so, Liza was able to maintain a cheerful, upbeat household. What had to be done for Emily (and later, for Annie, a daughter born with her own very challenging special needs) was woven into the fabric of a happy, close-knit suburban family life.

For Liza, taking the best possible care of her daughter has always included advocacy and fund-raising. On Emily's first birthday, she and Michael wrote letters to loved ones asking them to mark the event not with baby gifts but with a donation to CF research. (They raised $3,000.) Over the years, the letter-writing continued, then morphed into emailing, its reach expanding as family and friends forwarded emails to others. Every year, Liza inspired a community of friends, family and well-wishers to take part in the CF Foundation's fund-raising stair-climb.

And daughter Emily has refused to let CF hold her back. She graduated cum laude from the University of Pennsylvania, works at the Penn Social Media and Health Innovation Lab, and is a gifted writer and public speaker.

"She's amazing," Liza enthuses. "It's an honor to be her mom."

But Emily's health has steadily deteriorated. "She may look healthy," says Liza. "But she's not."

Emily has just 37 percent lung function. Each day she takes 30 pills, receives four shots of insulin, and spends at least three hours on airway clearance and breathing treatments to salvage every ounce of lung function and put off end-stage treatment for as long as possible. She often requires hospitalization to receive life-saving antibiotic treatment. Recently, one of the few antibiotics she could rely on to keep her alive stopped working for her.

"Emily's situation is dire," says Liza. "She's running out of treatment options."

As always, Liza channels her concern and alarm into advocacy. In December of 2011, Liza and her family founded "Emily's Entourage," (EE) a nonprofit devoted to raising money and awareness to help cure CF. It's all-volunteer, so every penny goes directly to fund live-saving research and therapeutics.

They set up a website (for which Liza's son Coby produced a video) as well as a Facebook page.
Then they told everyone they knew.

As of May 2014, Emily's Entourage has raised over $645,000.

"It's a simple equation," Liza tells me. "The only hope for Emily is research that results in a cure. And the only way there will be research is funding. But this isn't just about my kid. There are 70,000 people in this world with CF. Our fight won't be over till every one of them can take a deep breath."

If CF is wiped out in our lifetime, Liza Kramer will have had something to do with it. But that's not the goal. The goal is to find a cure for CF during Emily's lifetime.

And time is running out.

(This essay first appeared on WomensVoicesForChange.)