The Columbia girl was born with a condition called septo-optic dysplasia, which can cause hormone deficiencies and the absence of the septum pellucidum, a thin membrane that separates the lateral ventricles of the brain, which can cause intelligence, coordination and vision problems and more, according to the National Institute of Neurological Disorders and Stroke.

Lydia doesn’t have hormone deficiencies, which can cause growth problems, coordination or intelligence problems.

As proof of the girl’s verbal skills, Joan Olmsted, her grandmother, recalls Lydia saying not long ago that "all her bathtub friends were going to a conference."

Lydia does have optic-nerve hypoplasia, which means Lydia’s eyes have only a fraction of the more than 1 million connections - nerve fibers - that the brain needs to receive visual cues from the eyes.

From no hope to possibilities

When Lydia was diagnosed with the condition as a baby, Juli was told there was no treatment. But through the determination of the mother of a girl in Webb City with Lydia’s exact condition, Lydia became one of the first children to be treated with umbilical stem cells in a case study series being conducted by a hospital in China.

Dawn Barlett didn’t stop looking for treatment possibilities for her 6-year-old daughter Rylea even after third and fourth medical opinions gave the same no-hope pronouncements. Barlett said she started looking into nerve regeneration research using stem cells. Much research is being conducted on the possibilities stem cells offer in repairing spinal cord injuries and other neurological conditions, but she found no research that would help Rylea.

"I had contacted places all over the world - Bangkok, Thailand, Australia - all these different people doing research … and I never had an answer," Barlett said. "Then when I came across China Stem Cells … the week after I sent the e-mail, I got a response that they were willing to try it. They felt there was a significant enough chance to see results."

The Web site, www.stemcells china.com, Barlett found is for a Chinese company, Beike Biotechnology Co. Ltd., which leases space in 18 hospitals in China for their research and treatment, said Kirshner Ross-Vaden, the company’s vice president of patient relations.

Treatments and anecdotal reports

Ross-Vaden, a registered nurse who got interested in stem cell research when her son suffered a brain injury, wrote the theoretical protocol for treatment herself after researching Rylea’s condition, she said. She’d been tracking anecdotal reports from parents of patients or people receiving stem cell treatments for brain injuries, cerebral palsy and multiple sclerosis that noted vision improvements after treatment. Ross-Vaden believed the improvement was related to the way the stem cells were delivered to the body through lumbar punctures, injections directly into the patient’s spinal fluid.

"That fluid is pumped over the optic nerve," she said. "There was no real medical evidence, just patient reports, but there was clearly this trend you could see."

Barlett said doctors told her stem cells zero in on any cells that are underdeveloped, mutated or dead because they release a chemical to which the stem cells are attracted.

A group of American stem cell researchers released a report cautioning people against seeking unproven treatments abroad, but Barlett said she felt compelled as a mother to do anything - within reason - to improve her daughter’s quality of life, including traveling to China and paying about $25,000 for Rylea to receive five stem cell treatments - two intravenous treatments and three spinal injections.

"The treatment is such a new thing that they don’t guarantee anything at all," Juli said.

"It’s hard to know what our expectations should be. You want to hope for full sight, but if she could see colors, distinguish between people or get enough vision to keep her from bumping into things - she gets pretty frustrated," Juli said, breaking off. "Why do it? Because it might work."

Before Juli and Lydia traveled to Hangzhou, China, on Jan. 5, Lydia could sense light, and her eyes were very sensitive to it. Some eyes with optic-nerve hypoplasia have pupils that dilate in response to light. Lydia always asked for sunglasses when going outside.

Some improvement, and a warning

Juli and Lydia spent a month at the hospital, and Lydia received five stem cell treatments - one intravenous injection and four spinal injections - that cost $18,000 to receive, cheaper than Rylea’s treatment because Lydia was one of a group of children participating in a case study, Juli said. Ten children have been treated so far, Ross-Vaden said, and all have seen some improvement, but the first of the results of the case study won’t be released until August because children undergo a 12-month evaluation period with their own ophthalmologists in the United States after treatment. A clinical trial, which tests treatments against the placebo effect, is planned for 2008, Ross-Vaden said.

Gregg Berdy, surgical director of the Missouri Lions Eye Research Foundation, professor at Washington University and a general ophthalmologist in St. Louis, said Beike’s treatment protocol doesn’t follow the standard protocols used in the Food and Drug Administration’s sponsored clinical studies.

Any results need correlation in well-controlled clinical studies before anyone could make statements of a successful treatment, Berdy said. He cautions against seeking the treatment until the safety and efficacy of the treatment can be evaluated in longer-duration studies.

He also questioned the theory that stem cells naturally seek out damaged cells, and if they did, also questioned their ability to create optic nerves where there is none. "Even though China is emerging as a leader in new technologies, the quality controls and regulations required to police the individuals and corporations developing these advances are sometimes lacking," said Berdy, who regularly travels to China to lecture.

But Juli said she is already noticing changes in Lydia’s vision. "After her second treatment, we started to notice a change," Juli said.

The hospital had a Christmas tree up that Lydia and Juli had investigated before. After Lydia’s second treatment, the pair walked around the floor and came to the tree. "She walked over to it this time and said, ‘Oh, there are Christmas lights on the tree now,’ " Juli said.

Before the treatments Lydia was able to sense a flashlight 6 to 12 inches in front of her eyes. After treatments she noticed it 6 feet away, Juli said, and she’s become less sensitive to light. After a Monday visit to her ophthalmologist, Barlett said Rylea’s prescription has increased to somewhere between 20/800 and 20/600, an improvement from being completely blind. "If that’s what hers is," Barlett said of the 20/600 prescription, "the way we see something at 600 feet is how she sees it at 20 feet."

Barlett said when Rylea returned from her month, in China in July, she could trace 15-inch-tall letters. Now she’s tracing letters 1½ inches tall. Both families are thinking of returning for further treatments.

Patience and the stem cells debate

Juli keeps a journal of all the vision improvements she’s noticing in Lydia’s vision, she was visibly excited after returning from China and is eager to see what Lydia’s vision is like nine months from now, when the stem cells are supposed to mature. "We have to be patient, that’s the hardest thing," Juli said.

Patience is something Ross-Vaden doesn’t have for the American moral debate over stem cells that doesn’t distinguish between cells collected from embryos and those collected from umbilical cords after delivery. "In this country we’re really, really behind the eightball when it comes to stem cell treatment," she said.

Juli is trying to keep her hopes for Lydia realistic. "We’ll take what we can get right now and hope for the future," she said.

But at the same time, the Barlett and Olmsted families feel a bit like pioneers. "We’re daring enough to give it a try," Juli said, "and hopefully they’ll get a sense of how things are going for these guys and figure out for other children the best course of treatment."