RULO — The boy sits crosslegged on the bedroom floor as the Eagles take flight from his CD player.

“Well I’ve been running down the road trying to loosen my load …”

He weaves his head to the music, tracing an invisible figure eight with his chin.

Bright colors surround him — green walls, yellow plastic chairs, blue carpet — but they mean nothing to the boy. He has been blind since birth.

It’s just one of several debilitating health problems Kasen Sipple faces.

His underdeveloped brain makes him grow and learn more slowly than other kids. At only 33 pounds, 6-year-old Kasen weighs less than his 3-year-old brother. He can talk, but he doesn’t communicate in a direct question-and-answer sort of way.

The boy may be unaware of it, but he’s at the center of a growing storm.

He’s caught between the cautious, methodical approach of Western science and the more wide-open, experimental approach of a global health care industry, particularly in China.

He’s caught between the promise of stem cell treatments and stem cell hype, which has spawned what some call unethical and ineffective therapies.

Kasen’s narrow shoulders carry a tremendous load.

But they also carry hope.

His parents, Robbie and Amanda Sipple, have always made sure their son had the best medical care and therapy they can obtain from their trailer home on the banks of the Missouri River. As a result, the boy has done better than anyone predicted when he was diagnosed as an infant.

But doctors have told the couple nothing can be done about Kasen’s blindness or his brain development disorder.

Absolutely nothing.

The couple believed the doctors until about a year ago.

Now they believe they’ve found a cure.

On the Internet, they learned about a Chinese biotechnology firm that essentially says it can give sight to the blind.

The therapy involves stem cells, which have the unique ability to develop into many specialized cells in the body. Because of that ability, researchers believe stem cells have the potential to cure a number of illnesses, diseases and injuries that now have no cures.

But at the moment, blindness isn’t one of them, say detractors of the Chinese therapy.

Leading researchers and physicians have condemned so-called stem-cell tourism, which purports to treat everything from spinal cord injuries to acne.

Most agree the so-called treatments run far ahead of what research proves they can do. A few have even called the therapies modern snake oil that do nothing but raise false hope and fleece desperate patients.

The Sipples know what the experts say. But the experts offer them nothing.

China offers hope.

So the family has left Rulo, a village of 200 in the southeastern tip of Nebraska, for  Qingdao, China, a city of 2.2 million they’d never heard of until a few weeks ago. Kasen will undergo a series of stem cell infusions over the next month.

Donors have contributed funds to help with the $65,000 cost of treatment and travel, expenses that neither Medicaid nor private insurance will cover.

It will all be worth it, the couple hopes.

They want their son to see.

To learn more normally.

To live a regular life.

But for now, Kasen sits quietly in his room, bobbing his head and swaying his sweet smile to the music.

Guardian angels

Preschool starts with a little espanol.

“Hola, amigos,” says Alicia Schock, the teacher at Falls City Sacred Heart School. “Can anyone tell me what that means?”

“Hello,” says a little girl.

“Hello what?”

“Hello, friends.”

One boy sits apart from his friends on this spring morning.

Kasen Sipple can’t see their  faces or the colorful letters and numbers on the walls. He can’t see the pictures of frogs and butterflies or the finger-painted paper corkscrews dangling from the ceiling.

Instead, he quietly listens to music on a portable tape player.

Behind his dark blue eyes are underdeveloped optic nerves that make him blind. His autism makes it hard for him to communicate, and hormone problems make him smaller than most kids his age.

Despite the challenges, Kasen has been coming to the half-day preschool since he was 2.

The para-educator who normally helps with Kasen is off today. So his mother, Amanda Sipple, stays to help him get situated.

Amanda is a bright 25-year-old who laughs a lot and seems infinitely patient. She is open and articulate about her son’s disabilities. But it’s easy to picture her grilling a health care provider — politely, but persistently.

She says she feels indebted to Schock and her students for welcoming Kasen into the class and treating him like any other child.

Both the teacher and the mother say Kasen has made tremendous strides in learning and social development in the past three years. And the other students, they say, have benefitted from learning alongside a special needs child.

No strides today.

When Amanda turns off the music and asks her son to sit on the floor with his classmates, he starts whimpering. The whimpers turn into outbursts.

“Kasen is really loud,” says one boy.

“Stop screaming,” Amanda says, picking him up. “That’s not nice.”

In the school parking lot, he calms down, but he won’t respond to his mother’s questions.

“What’s the matter, K? Are you sleepy?” she asks calmly.

His head finds the spot where her neck meets her shoulder and comes to a rest. The boy cries.

They try not to let him get out of classwork by throwing tantrums. Yes, the screaming bothers her, but she keeps her cool by remembering how frustrating it must be for him.

He isn’t able to explain that he’s tired, or that he doesn’t feel well. His moods and feelings have to be interpreted and anticipated.

She takes him back inside after a few minutes. The students stand and recite the morning prayer.

“Angel of God, my guardian dear …”

Kasen sits and reaches for his tape player. Amanda asks him to stand. He doesn’t.

She makes him stand, but by the time the other kids get to the Pledge of Allegiance, he’s screaming again.

“That’s enough,” the mother says. “I think you need to go to bed.”

She gathers Kasen, his tape player and little jean jacket and walks out.

After the 9-mile drive back to their home in Rulo, the boy goes to his room and falls asleep.

Exceeding expectations

Kasen taps his bare feet on the floor, jamming to the funky thump of the Commodores on a classic rock station.

“She’s a brick …

“HOUSE”

He’s visiting the home of his paternal grandparents in Falls City, about 9 miles west of Rulo. The boy loves being bare-footed almost as much as he likes listening to music, so he pulls off his shoes and socks every chance he gets.

Without help from Robbie Sipple’s folks, Amanda’s dad, who also lives in Falls City, and her mom, who lives in nearby Horton, Kan., they couldn’t make it all work. Their siblings also provide support.

Still, Amanda stays at home to care for their three sons, Kasen, Kamden, 3, and Kyler, 1. Robbie formerly worked for a phone company, but now he is an independent marketer with National Companies, a job that affords him a flexible work schedule.

Standing 6-foot-3, with full, dark eyebrows and a shaved head, Robbie’s stature contrasts with his friendly smile and calm nature. The 35-year-old clearly enjoys being with his sons, handling everything from horseplay to meal prep without a hitch.

While an outsider might view their situation with pity or recoil from the hassles of raising a child with disabilities, Amanda and Robbie take it in stride. It’s their life. They can hardly remember what it was like before it changed.

 Kasen was born in Lincoln on Sept. 29, 2002, with low APGAR scores and low blood sugar. When the couple returned home, they had a tough time getting the baby to eat, often wrapping a cold washcloth around his foot to keep him awake during feedings. What he consumed usually came back up.

One night, when he was about 5 weeks old, Kasen ran a fever and started vomiting. They sped him to Children’s Hospital in Omaha, where an emergency room doctor noticed something unusual — the infant’s eyes were shaking.

A neurologist ordered tests. Four specialists saw Kasen and diagnosed him with septo-optic dysplasia (SOD), a disorder that shows up in about one out of every 100,000 births.

“We knew it was rare because they had all these students from Creighton come into our room and they asked, ‘Do you mind if they observe?’” Amanda says.

The disorder occurs when the septum pellucidum, a membrane found at the brain’s midline, fails to develop. Researchers aren’t sure what causes SOD, but it does not appear to be hereditary.

SOD causes abnormal function of the pituitary, a gland at the base of the brain, leading to problems with growth, heat regulation and other essential functions.

Without hormone replacement therapy, Kasen would die.

The doctors also diagnosed the boy with optic nerve hypoplasia, or underdevelopment of the nerve that sends vision signals to the brain. Considered one of the most common causes of blindness, ONH leaves some kids with partial vision, while others are fully blind.

Some children with the conditions learn at normal rates, but most are developmentally delayed. Some suffer mental retardation, although the diagnosis can’t be made until the child is old enough to measure IQ.

The prognosis varies with each case. Some with the disorders can learn to live independently, while others will always need help and supervision.

Robbie and Amanda were in shock. Amanda, especially, had a hard time accepting it because she was careful during her pregnancy. She ate well, got good prenatal care and really wanted to start a family with Robbie.

“I think what bothered me the most was, more than him, I felt this was my fault,” she said.

Doctors tried to prepare the couple for the challenges that lay ahead. They gave a worst-case scenario: Kasen might not ever sit up, crawl, walk or talk.

“We made it a priority that we weren’t going to accept that,” Amanda said. “That wasn’t acceptable to us.”

Amanda, who was working on a degree in education at Peru State College, dropped out to take care of their son.

The couple pursued everything they could to help Kasen, including occupational and physical therapy through the school district. The district also provided a vision therapist. Doctors believed Kasen’s optic nerves could likely detect light and dark, so vision therapy stimulated the functional neurons in his optic nerve so he wouldn’t lose what he had.

They also gave the boy daily injections of growth hormone and surgically inserted a tube into his stomach, which allowed the couple to feed their child special formula. They put him on other medications to replace the hormones his little body couldn’t produce.

Gradually, Kasen started doing what doctors had warned he may never do.

He sat up.

He crawled.

He walked.

And he started talking.

“It makes you a lot more appreciative of those milestones than you would be otherwise,” Robbie says.

When Kasen was about 2, he was diagnosed with autism. It slowed the gains he was making in language and learning.

Along the way, the Sipples got married and had their other children, neither of whom was born with the disorders.

Then, last year, while doing online research, Amanda read about a 6-year-old girl from Missouri who was born with optic nerve hypoplasia but could now see, thanks to a treatment in China.

The treatment involved implants of stem cells, harvested from umbilical cord blood by a private company in China that was using stem cells to treat a number of disorders, diseases and injuries.

Amanda talked to a representative of the company. The good news: The results were promising in kids like Kasen. The bad news: The treatments weren’t offered in the United States, they cost tens of thousands of dollars and they weren’t covered by insurance or Medicaid.

The couple made the decision to go to China.

The company needed Kasen to undergo a number of tests before it would approve him for the treatments. Amanda found the name of one of the most respected neuro-ophthalmologists in Nebraska. She called his Omaha office and asked if he would review Kasen’s medical history in preparation for the trip.

A nurse called Amanda back.

“He told her to tell us there was no treatment for ONH and if there was, he’d call us,” she said. “But if we wanted to try to convince him of this treatment, we could come to his office — he’d give us 15 minutes.”

They never bothered.

They didn’t have time for skeptics.

Reach Joe Duggan at 473-7239 or jduggan@journalstar.com.