Mount Holly couple educates community about spina bifida

by Alan Hodge

Tom and Christie Rainwater with their children eight-year-old Emma, 10-year-old Noah and 23-month old Luke. Doctors diagnosed Luke with spina bifida shortly after he was born. (Alan Hodge/MIM photo)

When Christie and Tom Rainwater of Mount Holly began looking for support and financial assistance after doctors diagnosed their newborn son, Luke, with spina bifida, they were met with roadblocks at every turn. Their answer, however, was to kick those obstacles out of the way and launch their own campaign designed to help parents in similar situations.
“When Luke was born in 2009, I had no idea what spina bifida was,” Christie Rainwater said. “We went to the Social Security office to apply for help with Luke’s medical expenses. They turned us down. Luke has thirteen doctors. One hospital bill alone was $56,000.”
According to Tom Rainwater, the situation took a toll on the family, making him feel as if he “had been hit with a ball bat.”
The Rainwater family may have felt alone, but according to the Spina Bifida Association, seven out of every 10,000 children are born with the defect that occurs during pregnancy, when the neural tube that will form the brain and spine fails to close or develop properly. Spina bifida, also known as cleft spine or myelomeningocele, is the most common permanently disabling birth defect in the U.S. and manifests itself in problems such as loss of bladder or bowel control, partial or complete paralysis of the legs and weakness in the hips, legs and feet.
Earlier this year, Christie channeled her energy into creating an event, Spina Bifida Awareness Day, which would give anyone interested in the topic access to facts and fellowship.
“I wanted an educational and networking event,” Christie Rainwater said. “I wanted other people to know there is support and hope out there.”
After much planning, that dream became a reality Saturday, Sept. 17, at Catawba Heights Baptist Church, where more than 200 folks filled the sanctuary for a series of lectures by spina bifida medical experts. Representatives from special needs vendors and advocates, such as Victory Junction Camp, the Shriners Hospital of Greenville, S.C., Livewell Medical and Levine Children’s Hospital, joined the speakers.
“I made a lot of phone calls, and Facebook was instrumental,” Christie said. “I also attended a special needs pediatric tradeshow sponsored by Bayada Nurses.”
She sent out letters announcing the event to surrounding school districts and municipal leaders.
Among those attending was author Marty Hartman of Arcadia, who turned his own experience with spina bifida into a children’s book on the subject entitled “The Adventures of Wally the Wheelchair”.
“When I was growing up there was nothing positive for kids with disabilities,” Hartman said. “I wrote the book to open up dialogue between parents and their children that have disabilities these days.”
Following the success of Spina Bifida Awareness Day, the Rainwaters plan to move ahead on their next goal in helping others with spina bifida and other special needs.
“We want to build an aquatic center in Mount Holly so people with special needs can benefit from water therapy,” Tom Rainwater said. “I estimate it will cost $7 million to build and $400,000 annually to operate. We will call it Luke’s Playhouse, in honor of our son.”
For more information on spina bifida contact Christie Rainwater at ccrainwater@carolina.rr.com.

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