Local parents organize Spina Bifida Awareness Day

by Thomas Lark

MOUNT HOLLY – “We’ve never thought of his disability as a burden – just as a blessing.”

Three-year-old Luke Rainwater was born with spina bifida. His family and church community will hold an awareness day Oct. 20 at Catawba Heights Baptist Church in Mount Holly. (Courtesy of Christie Rainwater)

That’s how Tommy Rainwater of Mount Holly put it recently, describing life with son Luke, born three years ago with spina bifida.

Rainwater, 48, and Christie, 40, his wife of 16 years, also have two other children: son Noah, 11, and daughter Emma, 9.

Tommy Rainwater said that his youngest son’s medical situation have made his whole family gain a greater perspective and a deeper appreciation of life.

Still, it’s not easy.

He said Luke’s medical bills, including multiple weekly therapies and eight surgeries so far are averaging more than $10,000 annually.

“It’s like buying a small car every year,” he said. “We’re doing a short-sell of our house, just to try to keep up with things. We’ve really had to scale back on a lot of things.”

According to the National Institute of Health, spina bifida’s cause remains a medical mystery. In Latin, literally “cleft spine,” spina bifida is characterized by an incomplete development of the brain, spinal cord and/or meninges – the protective covering around the brain and spinal cord.

It affects 1,500-2,000 in more than four million American babies born annually, and some 166,000 people nationwide live with it today.

For some reason, Rainwater added, it seems to afflict third-born children, like Luke.

NIH has determined there are several types of spina bifida.

This condition can lead to compression of the spinal cord and produce a variety of symptoms, including trouble with feeding, swallowing and breathing control, choking and stiffness and swelling in the upper extremities.

Luke suffers from an Arnold-Chiari malformation, his dad explained. Tommy Rainwater said there is much trouble in the child’s lower back, including a fluid sac in the spinal column, pulling on his brain and necessitating a shunt in the spinal cord—a common procedure for such cases. Luke also suffers from a bad spinal curvature that has gone from 45 to now 66 degrees.

“It’s pretty severe,” his father said. “But he doesn’t complain. Things seem to be working much better. He has a little more leg movement, but he still can’t walk or sit up for any length of time.”

Still, he added, Luke is otherwise doing fine, and he’s adjusting already to using a wheelchair that he got at Christmas.

“He just took right to it,” Rainwater said. “He’s just so happy-go-lucky!”

It’s important to note, according to the NIH, that most of those afflicted by spina bifida have normal intelligence and suffer only from physical limitations.

To help educate parents about the disease and to celebrate Luke’s third birthday, the Rainwaters are organizing Spina Bifida Awareness Day on Oct. 20. The event, which will include local vendors, will be held from 10 a.m.-1 p.m., at their church, Catawba Heights Baptist in Mount Holly.

“We’ve received a lot of help from our church,” Rainwater said. “All the people at church have just really adopted Luke, and they love on him all the time.”

Christie Rainwater explained the free event.

“Reaching the community to bring awareness has become our family’s passion!” she declared. “Our goal is to educate the community about spina bifida as well as network with other parents and meet vendors in our area that can assist us in our journey.”

Christie Rainwater asked those seeking information to call 704-601-6892. Additional details and event registration are available at the website: www.spinabifidaawareness.wix.com/spinabifidaawareness.

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