Florida teen with spina bifida educates researchers, doctors

From The Tampa Tribune in Florida:

Even scientists admit it's easy to get lost in the numbers.

Staring into high-powered microscopes and analyzing data ad infinitum puts a lot of distance between the research and the subject, even when it's a sweet little baby.

"When you look at the data, you tend to forget there's a child behind it with a birth defect, and a family," says researcher Russell Kirby, of the University of South Florida department of community and family health in the College of Public Health.

He's one of many scientists who devoted to building and dissecting the Florida Birth Defects Registry, the nation's third-largest collection of state data on conditions developed in utero. Most of the time, he and his peers are doing "surveillance," meaning they're tracking the numbers behind the boys and girls living with the disorders.

Conferences for these scientists usually focus on discussions of epidemiology and embryology. But recently, a roomful of self-described geeks got to meet one of the many faces behind the statistics. And Daily Londono (pictured), a spunky Alonso High student who lives with spina bifida, is anything but a number.

The Tampa teen rolled into the conference room wearing a trendy dress and black knee-high boots. People were as likely to notice her blond highlights as her wheelchair. And that's the way she likes it.

"There's not a lot of difference between me and every walking person in the world," Daily says.

She shared with the scientists how spina bifida is a part - but not the center - of her life. Spina bifida is one of the three major neural tube defects affecting the brain and spine, and is among the most common of all birth defects.

Sure, Daily has endured 10 surgeries on her back, hip, head, feet and belly. "But that's about it," she says. Even significant changes, such as moving to a wheelchair fulltime six years ago, don't keep her down.

Daily says she's inspired to speak out because her mom, Gloria Camacho, fought for her. The Colombia native was told her little girl wouldn't survive her first three months of life, but she fought for treatment and eventually brought her daughter to the United States.

Now the mother and daughter are talking about Daily getting her driver's license, going to college and studying to become a teacher.

This talk in front of all those scientists is no act, says Daily's stepfather, Felix Camacho. Daily understands her condition, but refuses to let it keep her from being a typical teen who hangs out with friends and dates.

"We treat her like nothing happened," he says.

Daily feels it's important to share her story so other kids with birth defects don't feel alone or isolated. An estimated 3 to 5 percent of all children born today have some form of birth defect. They vary from chromosomal abnormalities such as Down syndrome to congenital heart defects or limb malfunctions.

Kirby says it's important that scientists always keep the children in mind; it can help them better analyze and track the disorders. More importantly, it may help them identify steps that pregnant women can take to prevent the condition, he says.

A dose of Daily Londono's perspective did wonders for Kim Hauser, a birth defects researcher with the USF department of pediatrics. She says it translates all the science into a language that speaks directly to the heart.

"We can talk about disease. We can talk about impact," Hauser says. "But you don't know really, until you see a lady like this."