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Overcoming spina bifida: a family's story

A child with a rare condition and her parents overcome enormous struggles.

January 31, 2013 | 12:00 a.m. CST

Photograph by Hayley BartelsPhotograph by Hayley BartelsSecondary problems vary because they vary, not because the condition is rare or not rare. For Ryleigh, this means her lower legs turn inward, her hips can move in and out of place, and her spine goes into scoliosis. “Yeah, we get down, but we encourage each other and encourage her,” Carmen says. “We’re a family, and it just works.” Photograph by Hayley BartelsElectrodes on her legs help stimulate the muscles and increase circulation. Ryleigh is in therapy twice a week with Motavalli (right), and her parents perform the electrode treatments the other five days. Missouri First Steps, a program that provides services to children with disabilities, assigned Motavalli to the Rowe family soon after Ryleigh was born. “She was a perfect fit for us,” Ron says. “She’s a part of our family.” Photograph by Hayley BartelsCarmen swaddles Ryleigh after her bath. “Sometimes I go in, and I put on those braces at night, and I just wish she didn’t have to do this,” Carmen says. “I wish we didn’t have to do this. But then you see how awesome and how great she is; it makes it OK.”Photograph by Hayley BartelsRyleigh has had several surgeries in her short life, leaving her back scarred. “It’s pretty heartbreaking when you see this little child and ... it’s really hard to imagine what their future is going to look like,” Motavalli says. Ryleigh’s progress has Carmen hopeful for the future. “I don’t want spina bifida to define her or define us as parents,” she says. Photograph by Hayley Bartels Many people with spina bifida will never walk. But just the other day, Ryleigh’s parents, Carmen and Ron Rowe, and her physical therapist, Gerti Motavalli, were discussing what they could do to help Ryleigh learn to walk. At 17 months old, Ryleigh is outpacing their expectations. “She’s a very driven little girl, but I think she’s driven because we gave her a chance to be successful,” Motavalli says. Photograph by Hayley Bartels

At her day care, Ryleigh plays with other toddlers on the mat. Her day care includes children with and without disabilities. “The philosophy we both have, the family and I, is to get her as active as possible and as close to movements that other kids do her age,” Motavalli says. Although she is limited physically, Ryleigh’s mental development is comparable to other children her age. Photograph by Hayley Bartels

Twenty weeks into her pregnancy, Carmen Rowe and her husband, Ron, received news that would change the course of their lives. The Columbia couple sat in the hospital as an ultrasound technician examined the computer display. Today was supposed to be a happy occasion; Carmen was finally going to know if her baby was a boy or a girl. The solemn silence in the room was a clear indicator that something was wrong. Her baby had spina bifida.

The Rowes’ daughter, Ryleigh, is one of about 1,500 children born each year in the United States with this spinal defect, according to the Centers for Disease Control and Prevention. Ryleigh’s case is particularly severe. She has had several surgeries to place nerves that were exposed in utero, place a shunt in her brain to relieve pressure and close an area where spinal tissue was exposed. But after 17 months of therapy and uncertainty, Ryleigh is exceeding expectations.

Physical therapist Gerti Motavalli helps Ryleigh overcome developmental obstacles and associated with spina bifida and eases the Rowe’s fears about their daughter’s future. They now feel awe for what their toddler has already been able to accomplish.

“I am going to limit her, we are going to limit her, more than she ever will,” Ron says. “Who knows what she can do or not do? So I’m just going to let her be Ryleigh, and it’s beautiful.”

Check out the multimedia piece by Hayley Bartels.

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