NORWAY – The family of a young girl with a rare breathing disorder is hoping she soon will be able to breathe on her own.

On July 31, Faith Ann Waterman will undergo surgery at the Children’s Hospital of Philadelphia to remove a blockage in her airway.

Faith Ann was born in February 2004 to Melyca and Scott Waterman. Prior to the birth, the couple was told that Faith Ann had Congenital High Airway Obstruction Syndrome, known as CHAOS.

According to the Fetal Care Center of Cincinnati, the condition is caused by the absence or blockage of the larynx or trachea, or the presence of a cyst blocking the airway. The disorder is often fatal, because it leads to the buildup of fluid in the lungs, which can flatten the baby’s diaphragm and lead to heart failure.

“She is probably the fifth child in the world to have survived this condition,” said Karen Storman, Faith Ann’s grandmother.

Scott said he and Melyca spent six months at the Philadelphia hospital while his sister and her husband looked after their home.

While doctors initially thought Faith Ann would need in utero surgery, the swelling of her lungs stopped before it was necessary. She was delivered in a way that allowed doctors to open an airway at the time of her delivery.

“Before they could deliver her, they had to put the trach in,” said Scott.

Today, Faith Ann has a special apparatus to allow her to breathe, and has undergone bronchoscopies to monitor her condition, as well as physical and occupational therapy. She has also suffered from bouts of pneumonia during cold, dry seasons.

However, Faith Ann loves to tap dance and play with her younger sister, 2-year-old Hope. Though she cannot talk, she is able to form some words with air trapped in her mouth and to communicate through sign language.

“I knew the alphabet,” said Melyca. “Basically, I taught myself and then I taught her.”

The family makes several trips to the Children’s Hospital of Philadelphia each year, including one for a reunion with other families. Scott said that prior to Faith Ann’s birth, he and Melyca met a 3-year-old child with CHAOS who was in good condition.

“That was very encouraging,” he said.

During one of their trips to Philadelphia, the family met with a woman pregnant with a baby diagnosed with CHAOS, and it was Faith Ann’s turn to be encouraging.

Storman said Faith Ann is missing part of a ring of cartilage in her trachea. Following this month’s surgery, she will undergo a procedure to remove cartilage from her ribs to help reconstruct her airway.

The family says the experience has led to acts of kindness from friends and relatives and even strangers. During a trip to Philadelphia, a person at a rest stop offered to pray for Faith Ann.

“It’s amazing,” said Storman. “She just has a way of drawing people to her and making them happy.”