LITTLE ROCK, Ark. (KTHV) -- Most babies are born healthy. But, there are some babies that look healthy and still have a rare disorder.
Nine-month-old Alex Rigsby is your typical baby. He appears healthy, happy and very talkative!
The only difference is that doctor's visits happen often. Every month, he comes to Arkansas Children's Hospital for a check up.
Dad Jeremy Rigsby explains, "They are watching his nutrition. They're making sure his digestive system is working properly."
As a newborn, Alex was diagnosed with cystic fibrosis. It was a life changing moment for new parents Jennifer and Jeremy.
Mom Jennifer recalls, "It just makes you think of the unthinkable. Will he suffer? You know, will he struggle?"
Cystic Fibrosis is a genetic disorder that happens in one in 3,200 briths. Nearly 30,000 Americans live with the disease.
Dr. Amit Agarwal says it's marked by chronic infections, clogged airways, and digestive and re-productive problems. "Life expectancy is normally around 35-40 years. Before these kids weren't able to grow up to be adults."
Doctors say early detection is key. By law, the Natural State requires advanced screenings on newborns for 30 plus disorders, including cystic fibrosis. Before 2008, babies born in Arkansas weren't tested.
"We are able to get them early. We are able to start treating them early and we are able to get them better nutrition," explains Dr. Agarwal.
"If we would have not had the screening and had we not known, at some point he would have begun to get sick or have problems thriving," says Jennifer.
Meanwhile, Dr. Agarwal believes a cure for the disease will happen soon. He says research and medicines are improving every year. Until then, Alex will continue his doctor's visits, meds, and therapy. Once he turns 1-year-old, he'll see a doctor once every three months for the rest of his life.
It's a new way of life for the Rigsby family, but one they're thankful for. They say they're appreciative for the newborn screening tests. Jennifer says, "We are very grateful for the care that we have and the opportunity to do everything we can for him from day one."
Learn more about newborn screening in Arkansas.