PROVO, Utah — A Provo family welcomed their daughter into the world back in June of this year.
Eliza and Ben Mortimer's now six-month-old daughter Billie is their pride and joy.
"She's so inquisitive and playful and she just lights up our world," Eliza said.
When Billie was born, the Mortimer's say, they noticed something was wrong right away.
"She came out silently, which is obviously not a great sign," Ben said.
"We knew that something was wrong," added Eliza.
They tell FOX 13 News that their baby girl wasn't breathing well either.
"She basically didn't have an airway or at least a very small one it's about the size of a straight pin," Ben said.
After about 15 hours, doctors at Timpanogos Regional Hospital in Orem were able to work to determine what exactly was wrong with Billie.
"She was born with a congenital upper airway obstruction, there's an acronym called CHAOS, where her vocal cords were nearly completely fused," said Dr. Jordan Schramm, who helped care for Billie.
According to data from Cincinnati Children's Fetal Care Center, there have been fewer than 50 cases of CHAOS since 1989.
"This is probably the second case I've been involved," said Dr. Schramm.
Dr. Schramm specializes in medical and surgical treatment when it comes to ear, nose and throat diseases in children.
"We had talked about putting a tracheostomy tube in, and that was about a week after birth that we did," said Dr. Schramm.
Since then, Billie has required around-the-clock care from her parents and others.
"If her trach does come out, her doctor said she has around two minutes to live," Ben said.
To be there and care for Billie, Ben and Eliza both had to quit their jobs and are moving to Oregon at the end of the month to be closer to family, who can help them out.
The Mortimer's say they are hoping, at some point, Billie can get surgery to reconstruct her airway and help give her a voice.
"If she gets a voice from what we've been told, it's going be kind of scratchy and weak," Ben said.
Even if Billie is never able to speak a word, the Mortimer's say they are learning sign language.
"I want to give her the quality of life that will allow her to flourish," Ben said.
The hope is, that as their daughter grows up, she will not only be able to communicate with them, but also have a sense of normalcy as well.
"I want her to feel a connection in this world and so we're going fight to give her that connection," Eliza said.
The family has started a GoFundMe that you can visit here.
