He and Ogilvie hope their work with a company called Axial Biotech will lead to a gene test that would tell even before symptoms appeared whether someone had the gene for scoliosis. "It would be nice to say we have a cheek swab" to test for it, Braun said. That would be a huge help to large families. If someone has a child with scoliosis, all the children are followed because of the genetic component in 80 percent of scoliosis cases. A gene test could save siblings from exams they may not need.

The disease is five times more common in females. The fact that fewer males have it may mean that "boys have something protective" that girls lack. It appears to follow an autosomal dominant pattern of inheritance.

Ogilvie and Braun believe a genetic test will say a lot about how severe the scoliosis will ultimately be. Perhaps, Braun speculates, something in the body that preserves symmetry goes awry with scoliosis, and that could be exploited for treatment.

Maybe it would mean adding a dietary treatment like folate, as is done with certain metabolic diseases. Perhaps it would work like an insulin pump with diabetes, some substance added to correct something that's missing or misdirected. "It has to be some cellular and protein alteration" that could be treated, he said.

"Scoliosis is a disease that begs to be impacted in as many ways as possible — friendlier interventions, cellular, pharmacological . . . ."

People are taking one of two approaches to scoliosis, Ogilvie said, either "mechanical with bigger rods and hooks and screws and fusion — or genetic, and there are few people involved in the latter. Right now, mechanical is all we have."

Still, as second, third, even fourth generations of mechanical "fixes" travel through the process of becoming marketable, Ogilvie predicts that the gene test and subsequent treatment will get there first.

So although Lily's parents worry about a treatment plan that seems to stretch out indefinitely, with its time off for appointments and the fitting and refitting for a new brace as she grows, the expense, the sheer frustration of not knowing the outcome early, Braun encourages them to give the brace a chance to help the little girl — and to buy her time until something better comes along.

It will come, he promises.

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E-mail: lois@desnews.com