Three-year-old Alex was born with Cystic Fibrosis (CF), the most common fatal genetic disorder in the United States. This non-contagious disease, which prevents normal function in the lungs and pancreas, occurs in one in 3,200 live Caucasian births and one in 15,000 African-American births. Some 30,000 Americans are afflicted.

From their daughter's infancy, Janet and Delane Faircloth knew that something, physically, was very wrong with her. "She cried constantly. We didn't know it then, but it was because of the pain in her stomach," recalled Janet Faircloth. Baby Alex had was always hungry and often had trouble breathing. The couple later learned that the dense mucus in Alex's pancreas impeded digestion and absorption of nutrients; in her lungs, it thickened and impaired breathing.

At three months of age, Alex was hospitalized with pneumonia. Her pediatrician began treating her with various asthma medications. "But she didn't respond, and her breathing got worse," Delane Faircloth said.

A second doctor also diagnosed asthma, and ordered aggressive treatments with inhaled medications. There was no improvement. Alex began losing weight.

Desperate, Janet Faircloth decided to research childhood illnesses on her own. When she started reading about CF, she didn't want to believe her own instincts. "It was a description of MY child," she said. The Faircloths visited a third pediatrician and asked about the possibility of Cystic Fibrosis.

"He said 'Absolutely not!'" remembered Faircloth. "He told me that if she had CF, her stools would be white like clay."

"That sounds like purely textbook medicine," said Kara Mitchum, nurse coordinator at the Pediatric Cystic Fibrosis Center at the Medical University of South Carolina in Charleston. "Alex was a typical CF patient. We were amazed that she had gone for so long without being diagnosed."

None of Alex Faircloth's pediatricians had recognized the classic symptoms of CF in the little girl. These symptoms (please see inset) vary widely in type and severity, and are often mistaken for asthma and other conditions.

When Alex's long, violent bouts of coughing left her unable to breathe, the Faircloths had her tested for allergies. The allergist ordered a lung x-ray and diagnosed a second bout of pneumonia. He referred the Faircloths to a new pediatrician, Dr. Alfonso Sangtien of Conway.

Right away, Sangtien suspected that Alex might have CF. Her growth chart was particularly alarming. At 18 months old, Alex weighed only 17 lbs. "She weighed more when she was just 12 months old. We call that a failure to thrive," he said.

The doctor immediately ordered a sweat chloride test for Alex. This painless, relatively inexpensive test, performed at McLeod Regional Medical Center in Florence, confirmed that Alex had CF. Within days, she was on her way to the Pediatric CF Center in Charleston.

"After they get over the initial shock that their child has a serious illness, many parents want to do all they can to raise money for a cure," said Barbara MacWilliam, director of development for the South Carolina CF Foundation in Columbia. With the help of Janet's childhood friend, Theresa Nash of Surfside Beach, the energetic young couple got to work.

In just eight months, the team organized a major event to benefit the CF Foundation. An ambitious goal of $10,000 was set for the Grand Strand's Great Strides Walk For A Cure, held May 6 at Myrtle Beach State Park. "But the Faircloths belong to this extraordinary church in Longs," said MacWilliam.

With enthusiastic community spirit, the Mt. Leon Baptist Church congregation helped raise over $17,000, at a benefit barbecue and with the help of its team of walkers. The Great Strides event earned a total of over $32,000 for the CF Foundation. 91% will go directly to research.

As for Alex, she's a thriving tomboy whose favorite toys include her dollies and Daddy's four-wheeler. Every three months, she travels with her parents to Charleston for a checkup at the CF Center; an estimated 20% of the center's patients are from Horry and Georgetown counties. She still sees Dr. Sangtien occasionally. And Alex is becoming an active participant in her own treatment, which is important. As children with CF grow into adulthood, they need to become knowledgeable about the disease, and diligent about the therapies used to fight it.

"She can tell when the nebulizer is finished, because it quits smoking." her mother said. "She tells us when it's time to take her enzymes."

"She's been doing this since she was 18 months old," added Delane. "It's all she knows."

Classic primary symptoms of Cystic Fibrosis:

• Very salty-tasting skin
  
• Recurring upper respiratory infections
  
• Failure to thrive (weight loss or no weight gain)
  
• Increased appetite (or no appetite)
  
• Greasy, large, foul-smelling stools
  
• Clubbing of the fingers
  
• Meconeum ileus (bowel obstruction) in newborns

If you or someone you know has any of these symptoms, please call the MUSC Pediatric Cystic Fibrosis Center at 792-7653 or the Adult Center at 792-0729.