The News Courier in Athens, Alabama

April 8, 2013

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

By Lora Scripps
lora@athensnews-courier.com

— 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. 

Overcoming obstacles

Today, both Kierstynn and Kathy lead full lives. The two met after an article about spina bifida in The News Courier that ran two years ago.

Kathy, who started to work at age 18 and worked — mostly in sewing factories — until 2009, is thankful for all the employers that gave her a chance. “I loved to work,” she said.

She has also been married to MF Long for 37 years. “He is a wonderful man and a hard worker,” she said. “I know I am blessed.”

There are 166,000 other people in the U.S. just like Kathy and Kierstynn — all living with this commonly occurring, permanently disabling birth defect. There is no cure and the cause is unknown. Medical studies have shown that the addition of folic acid to the diet of women in childbearing age may significantly reduce the incidence of spina bifida, according to Kathy.

Bowl-a-Thon

Kierstynn and her family and Kathy are advocates for others with spina bifida.

They all plan to attend the annual Spina Bifida Bowl-a-Thon, sponsored by the Spina Bifida Association of Alabama, from 2-4 p.m., April 27, at Madison Bowling Center, located on U.S. 72 East in Madison. The event will include a silent auction and raffle and most importantly, allow those with spina bifida of all ages to bowl — a game many have never had the opportunity to enjoy.

Kierstynn bowled for the first time last year. “They had so much fun,” said Cassie, who has been involved with the organization for three years. She found out about the group and thought the association would be a neat way to get involved with other families going through a similar situation.

Family and friends are also welcome to form teams. “It is a great time for all,” Kathy said. “It is open to anyone.”

Proceeds from the event will benefit the SBA of AL and will be used to help people of all walks of life that are affected by spina bifida. Monies help the group as it strives to provide the most up-to-date medical and social information related to the disorder as well as provide assistance for equipment and supplies. SBA of AL also helps with educational scholarships and sending families to Camp V.I.P among other things. 

Donations to SBA of AL are tax deductible.

“Kierstynn loves the Bowl-a-Thon,” Cassie said. “The kids keep asking when we are going to go bowl.”

Last year, Kathy got to bowl for the first time in her life. “That ball is heavy,” she joked. “I thoroughly enjoyed it.”

Kathy said her hope is in her lifetime a cure in found.

To find out more, visit 2013huntsvillebowlathon4sb.kintera.org.