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April 8, 2013

Spina Bifida Bowl-a-Thon set for April 27 in Madison

— At first glance Kierstynn Turner, 3, and Kathy Long, 59, might appear to have little in common, but the pair are bound together by a disorder both have had since birth — spina bifida.

Spina bifida, meaning split spine, is a neural tube disorder caused by the failure of the fetus’s spine to close properly during the first month of pregnancy.

Babies born with spina bifida sometimes have an open lesion on their spine where significant damage of the spinal cord has occurred. Although the spinal opening can be surgically repaired shortly after birth the nerve damage is permanent resulting in varying degrees of paralysis of the lower limbs. Treatment for the varying effects of spina bifida — myelomenigocele being the most common and sometimes severest form and menigocele less severe — may include surgery, medication and physical therapy. 

Kathy’s story

Kathy was born in 1953 with a mild form of spina bifida.

During her childhood she wore braces that went up to her knees.

Throughout her young life, she had countless foot and leg surgeries. It was when she entered her first years of adulthood that she was able to wear shoes.

Doctors told Kathy’s mother that her daughter was one of the “first few babies to live with spina bifida in Alabama.”

Although Kathy has four sisters who were born healthy, her brother — born 1949 with spina bifida — died at 3-weeks-old. “At that time, the medical field didn’t know what to do,” Kathy said.

The life expectancy of someone with spina bifida while Kathy was growing up was 30 years.  “I turn 60 in July,” she said. “The Lord has blessed me.”

Kierstynn’s story

Kierstynn, the daughter of Kyle and Cassie Turner of Elkmont, was born in September 2009.

An ultrasound, meant to discover Kierstynn’s gender, uncovered the disorder.

At birth Kierstynn was diagnosed myelomeningocele.

Similar to Kathy, Kierstynn has undergone a number of surgeries.

Though she has a wheelchair, Kierstynn is walking — something she had trouble with a little more than a year ago. She goes to therapy once a month.

“We were told there was an 80 percent chance she would never walk,” Cassie said. “She overcame those odds big time.”

Also like Kathy’s sisters, Kierstynn’s brothers, Blaze, 4, and Slade, 3, were born healthy. Cassie is also expecting a healthy baby boy named Zane in June. 

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