THE BLOG
10/06/2014 12:32 pm ET Updated Dec 06, 2014

Cystic Fibrosis: The Disease That Came to Stay

Cystic fibrosis came to stay on Good Friday 1986 at 5 p.m. when my giggly toddler was 22 months old. It began to take her breath away before we even knew what it was. "Cystic fibrosis?" I said to the voice on the phone. "What is that?" The voice that I'll never forget responded coldly, "She'll be dead before she's 5. Call a specialist." And the line went dead. And our world crumbled.

How does one climb out of the darkness when such a future is staring at you and try and stop what you've been told is the inevitable death of a loving, lively, twinkling, sweeter than sweet child? You just do it. You cry every tear that has ever been until your face and clothes are drenched in the liquid of your soul's anguish. You get up, dry off, and start searching for answers about this disease that is now the most potent enemy of your daughter, and of you.

Cystic fibrosis. The most common fatal genetic disease in North America. Yet, it's not that common at all. Approximately 30,000 people in the U.S. have cystic fibrosis, or CF. Those born with a disease that is supposed to shorten their lives through endless bouts of painful lung infections, liver damage, CF-related diabetes, and severe and painful gastrointestinal complications, don't subscribe to being victims. They are imbued with wisdom, strength, courage, and determination far beyond their years. Through our journey, my daughter and I have lived our mantra: giving up is not an option. We've grounded each other with a strong love that keeps us safe when her world cracks and groans and throws her for a tumble because of CF.

Oh, the joy in 1989 when the gene that caused the thick glue-like mucus that clogs up the airways and passages in other organs was discovered! Now -- all of our friends said -- she'll live! That nasty sticky mucus will flow like water through her cells and will no longer create breeding grounds for deadly bacteria that create painful infections. Wait, said those of us with our ethereal children. There is no cure yet.

We turned to Cystic Fibrosis Research, Inc. (CFRI) in Palo Alto, California for support and information about CF. We turned to CF specialists for ongoing care of this progressive disease involving multiple organs. To gain weight, our spirited daughter needed to take pancreatic enzymes because the thick mucus blocked the ducts in her pancreas, thus preventing the release of her own enzymes to digest food. Now her diet was to be high fat and high calorie food... like ice cream, chips, and fat-laden sauces. We were medically compliant, never missing a day of multiple inhalation treatments and chest percussion therapy, so that her lungs would remain open and give her the precious breath that she needed to survive. Oral antibiotics and fungicides became our heroes. But her lungs were the champions. They stayed healthy. She lived. Her liver didn't. At age 12, my daughter went into unexpected liver failure. The most common fatal genetic disease in North America became uncommon again.

After weeks of endless painful procedures to save her, we neared the end. To save her, the best doctors in the world began to look to live donors. "Me, let me!" I cried. I can save her. No, you can't. You are too skinny. It's too risky. I called CFRI for support. Mother's Day 1997 -- she has three days to live. We could only wait. And, miraculously, a perfect liver, from an unknown angel, came to rest in her body.

Seventeen years later -- after graduation from UC Berkeley with highest honors, 11 years of marriage to her sweetheart, countless life highs and health lows, and the discovery of nearly 2,000 CF genetic mutations later -- she is still lighting up the world with her gentle nature, her passionate opinions about matters most important, and her continued fight to live with CF. She is now awaiting the new drugs that for the first time treat the underlying cause of CF. Still there is no cure. But there is tremendous hope that the medications will stop the cycle of lung infections and let her breathe easily again, without the pain that wracks her body. The most common fatal genetic disease in North America could well be on its way to being tamed. She will be waiting. She will not give up. I'll be right beside her.

Sue Holt Landgraf is the Executive Director of Cystic Fibrosis Research Institute (www.cfri.org) in Palo Alto, CA, the nonprofit dedicated to funding research, providing education and support, and spreading awareness of cystic fibrosis she contacted over 25 years ago. The median life expectancy of those with CF is now in the early 40s.