Toddler battles spina bifida as family increases awareness

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The Turner family including, from left, Slade, Cassie, Blaze, Kyle and Kierstynn Turner are a part of the Huntsville chapter of the Spina Bifida Association of Alabama. Kierstynn was born with spina bifida. The Turners are raising money for the association through a local bowl-a-thon held April 30 at the Madison Bowling Center. Courtesy photo
Kierstynn Turner is a fighter. She hasn’t started to walk, but weakness in her legs is her only problem. She has an 80 percent chance of walking one day and leading a healthy, happy life. Courtesy photo

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April 9, 2011

By Lora Scripps lora@athensnews-courier.com The News Courier Sat Apr 09, 2011, 02:00 AM CDT

— Nineteen-month-old Kierstynn Turner is into everything. If she isn’t sneaking off to play, she is climbing all over her two older brothers, Blaze, 4 and Slade, 3.

There is only one small difference. Kierstynn, the daughter of Kyle and Cassie Turner, was born with spina bifida. Spina bifida literally means cleft spine and is characterized by the incomplete development of the brain, spinal cord and/or the meninges.

Her mom, Cassie, said she was 20 weeks pregnant when she found out about the complication. Excited about finding out the gender of the little one growing inside of her, Cassie’s ultrasound uncovered something else. Her little girl had a sac of fluid on her brain.

Cassie was sent to Birmingham for the prognosis. The family would continue to travel to Birmingham every month until Kierstynn was born. At birth Kierstynn weighed 5 pounds, 6 ounces. She was diagnosed with myelomingocele, meaning her backbone and spinal canal didn’t close as she was developing. There was no known cause for the diagnosis and her family began the journey of living with spina bifida. Kierstynn’s spinal column had to be reconstructed and she has a shunt that helps keep fluid from building on her brain.

She is a fighter. Her parents were told that after her birth they would most likely spend six weeks in the hospital. They were home in 10 days.

Today, Kierstynn hasn’t yet started to walk. Her ankles have a hard time bearing the weight of her body, but the weakness in her legs is her only problem.

“She is crawling, feeding herself and playing with her brothers,” Cassie said. The family has been told she has an 80 percent chance of being able to walk on her own with the help of braces or walk without any help one day.

There are 166,000 other people in the U.S. just like Kierstynn — all living with this most common occurring, permanently disabling birth defect.

Fortunately, the Spina Bifida Association of Alabama helps families just like the Turners.

Cassie said her family became involved with the Huntsville chapter, whose mission is to promote the prevention of spina bifida and to enhance the lives of all affected, a year ago.

The Turner family wanted to become involved in a group where other mothers and fathers knew what they were going through. “It can become emotionally draining and can overwhelm you at times,” Cassie said. “Having two healthy kids and one disabled can be like night and day. It’s a lot to figure out. The Spina Bifida Association is there to support you.”

Cassie said the Turner family knows they are blessed. “God gave her to us for a reason,” Cassie said. Now they are trying to reach out and share their experiences to let others know they are not alone.

The Spina Bifida Association of Alabama has been a great resource of information and support, according to Cassie. They help families just like the Turners attend the National Spina Bifida Conference where children can meet other kids just like them and families can learn more about the condition. They also learn about new therapies that can help children like Kierstynn stay healthy and live a long, healthy life.

The Spina Bifida Association of Alabama will host a local bowl-a-thon April 30 at the Madison Bowling Center to raise money for the association.

The money that is donated will help supply diaper bags and books with lots of information for parents of spina bifida babies. Information much like the Turners received when Kierstynn was in the hospital. It also helps families to get special equipment and other items that might not be covered under their insurance. Proceeds stay in the state of Alabama and helps families with their everyday needs as well as provide scholarships to those living with spina bifida. For more information on how to help, contact Cassie Turner at 256-732-4585 or bamachick03@gmail.com.

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Toddler battles spina bifida as family increases awareness

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