Severe hypophosphatasia left Janelly Martinez-Amador of Tennessee unable to form bones. Doctors expected her to die shortly after birth, but the little girl held on until a breakthrough drug was developed. Six years later, she's developing a skeleton and learning to walk — even dance.
 
When Janelly Martinez-Amador was born without bones, doctors gave the tiny baby swaddled in pink a day or two to live.
 
She had no ribs to support breathing, no skull to protect her brain and was unable to move her own body.
 
Six years later, she's on her feet and learning how to dance.
 
Janelly was treated with a breakthrough enzyme drug that's helping her develop a skeleton. She was one of 11 children in the world to undergo a clinical trial to treat severe hypophosphatasia (HPP), a disorder that prevents bone mineralization.
 
"You can imagine what it's like to feel the fingers or arms of someone who doesn't have bone," Dr. Jill Simmons, a pediatrician who worked with Janelly at the Monroe Carell Jr. Children's Hospital at Vanderbilt in Nashville, told the Daily News.
 
"You squeeze the arm and it feels soft or rubbery," she said.
 
Doctors were skeptical the new drug would work — of all the children, Janelly's case was by far the worse.
 
"We were fearful that her bone disease was so terribly severe that it might not work," Dr. Michael Whyte, who led the study, said in a statement.
 
"But by looking at the X-rays and hearing about her visits, we were thrilled to hear about her progress," said Whyte, a director at the Center for Metabolic Bone Disease and Molecular Research at Shriners Hospitals for Children in St. Louis.
 
Janelly was 2 years old — already surpassing doctors' expectations — when she began treatment. She received the medication through a port surgically inserted into her abdomen.
 
Eighteen months later, a rib cage began to show in her X-ray.
 
She could move her limbs, reach for things and roll over.