What do you do when you find out your newborn has a genetic disease that has no cure?

After getting over the shock of it, you do everything in your power to keep that child healthy, and raise awareness and funds to find a cure.

My name is Ashley Williamson. My husband, Cliff, and I live in Wagener-Salley. In 2004, our world changed -- our beautiful daughter, Taylor, was born.

Taylor was the first grandchild on both sides of the family. Everyone was so excited. However, during her first months, she wasn't gaining enough weight, and after several tests, we found out that she has cystic fibrosis. CF is a genetic disease that affects the lungs and digestive system. A defective gene causes the body to produce unusually thick, sticky mucus that clogs the airways and leads to life-threatening lung infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food -- hence the lack of weight gain. More than 10 million Americans are symptomless carriers of the defective CF gene, which was the case for Cliff and I. Since her diagnosis, Taylor has been through more than any 4-year-old should have to endure. Her daily schedule of breathing treatments alone can be burdensome. Fortunately, she has only had one overnight hospital stay related to CF so far.

My family and I are gearing up for the annual CF fund-raiser walk, Great Strides, on Saturday, April 18, at Riverfront Park in Columbia. I attended a meeting with members of the CF Foundation recently, and they believe a cure is within reach. Thanks to the foundation's investments in CF research and care, the median predicted age of survival for people with this disease has doubled in the past 25 years. When Taylor was diagnosed in 2004, the predicted age of survival was 35. Since then, it has increased to 37. That two-year increase means the world to me as a parent of a child with CF, but it isn't enough. I want so much more for Taylor. I want her to live a long, healthy life -- one not spent in the hospital or doing breathing treatments the majority of the time.

The CF Foundation does not receive funding from the federal government. Almost 90 cents of every dollar raised goes directly toward CF research and programs. Donations are tax deductible. If you are interested in walking or donating, visit greatstrides.cff.org. You can also send checks directly to the foundation. Mail checks, payable to the Cystic Fibrosis Foundation, to: Cystic Fibrosis Foundation, South Carolina Chapter, 215 East Bay St., Suite 205B, Charleston, SC 29401.

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