RALEIGH – Dawn Torrence knows all too well that what you don't know can hurt you.

Fifteen years ago, when Torrence was 19, doctors told her that her newborn baby Shane suffered from a little-known disease called congenital diaphragmatic hernia, or CDH.

CDH meant that Shane's diaphragm, the muscle responsible for drawing air into the lungs, failed to fully form.

"Because he had no diaphragm on one side, everything in his stomach was in his chest," Torrence said.

For the first 10 months of his life, Shane was in intensive care at Duke Hospital. When he finally came home, he was on full life support.

Doctors gave him two weeks. But then, Torrence said, there were miracles.

"[Shane] got off the vent, got rid of the trach, got his hearing and his sight back when doctors told us that was impossible," Torrence said. "By the time he was four, he was walking, doing sign language."

But by age six, CDH was again taking its toll on young Shane.

"It just got the best of him, and we lost him when he was 6-and-a-half in '99," Torrence said.

But now, Torrence is out to raise awareness of CDH and provide support for the 1,600 families who deal with the disease every year. As she knows all too well, half of those babies won't survive.

Her organization, called Cherubs, was the first to publish a Web site about CDH.

"Started cherubs with two members and a typewriter on my kitchen table," Torrence said. "Now we have over 2,400 families in 33 countries."

The Web site provides information and research and tells stories of babies who have been lost. It also gives parents an avenue to reach out.

"We have a hundred of forums they can talk to about feeding issues, or grief, or dads can talk or the older cherubs can talk to each other -- tons of other online services," Torrence said.

Torrence said getting the word out about CDH is important, especially since the disease is as common as cystic fibrosis.

"We don't have a national spokesperson, we don't have any celebrity endorsement, we don't have millions of dollars in donations," Torrence said. "We're still basically a small organization running on minimal funds trying to get the word out."