OMAHA, Neb. -- She's the size of a petite 2-year-old.

But listen to Samantha Binning, 5, of Kansas City, Mo., play make-believe with her dolls and you quickly realize her stature doesn't measure up to her vocabulary.

"There are days when she asks, 'When will I be big like the other girls?' It breaks my heart when I tell her what's more important is that you have a big heart, brain and you're nice to people," said Samantha's mother, Heather Binning, who shared their story with KETV in Omaha.

Before the girl was born, she was diagnosed with a severe form of a genetic disorder called osteogenesis imperfecta, also known as brittle bone disease. She was not expected to survive birth.

"We actually sat down and made all the funeral plans," said Heather.

Samantha had dozens of broken bones in utero. Ultrasounds showed the baby's arms and legs were short and curled. The jagged edges of her bones were gouging into her internal organs, causing damage.

"Every time I would bump into something I thought, am I breaking her?" said the girl's mother.

After Samantha was born and her condition stabilized, the Binning family made their way to Omaha's Children's Hospital from their home in Kansas City, Mo. Children's is home to the specialized Metabolic Bone Disease Clinic, in place since 2002. Children with disorders like osteogenesis imperfecta come to the clinic from 28 states and five different countries to seek breakthrough treatments. About 25,000 people are known to be living with the disorder.

Samantha was one of the youngest patients ever treated for the disorder with specialized medications to strengthen bones and surgery to implant stainless steel growing rods in her arm and leg bones.

"Medicine keeps changing. It's kind of a magical thing. The longer your career is, the more you see things change," said Samantha's pediatric orthopedic surgeon, Dr. Paul Esposito.

Esposito teaches at the University of Nebraska Medical Center. He said during his 30-year career, he's watched treatments for patients like Samantha evolve to be less invasive, giving children greater mobility and comfort.

"Somebody like Samantha, the best we could do historically is make her comfortable in a wheelchair," said Esposito.

Now, at age 5, Samantha is able to walk five steps on her own. And she's so fond of Esposito, she named her plush dog toy after him.

"You're a goofball, you know that?" he tells the girl, examining her legs at a recent appointment at Children's.

The family travels to Omaha yearly for a one-stop-shopping appointment with specialists at Children's Hospital. Therapists, a nutritionist and doctors all gather at the clinic so the family doesn't have to coordinate a dozen separate appointments.

"This has been the biggest blessing of our whole lives. I swear to God. This hospital is the most fantastic place on earth," said Heather.

Though the girl continues to have numerous bone fractures, she doesn't require a cast or special treatment, other than over-the-counter painkillers and rest. The rods in her bones prevent serious breaks. She gets around mostly by doing a bear crawl so she's close to the ground in case she takes a tumble. Samantha said her bones give her trouble.

"They're fragile and sometimes I fall down and they break," she said, taking a break from playing with her Harry Potter doll.

Samantha's photograph is on billboards across Omaha. The smiling ballerina is also featured in advertisements in airline magazines and posters with the caption, "She's pursuing dreams of dancing and achieving dreams of walking."

On one recent trip to Omaha, Samantha's 8-year-old brother, Carter, spotted Samantha's massive billboard at 72nd and Pacific streets.

He told his mother Samantha is "gi-normous."

Yes, Samantha is getting her wish: To be big.

Learn more about Samantha's story and hear how her mother is coping with parenting two special-needs children at KETV.com.