SoLina’s grandson is so-special!
By Jana E. Pye, Editor, firstname.lastname@example.org
When you think of SoLina Auction, you may think of wonderful antiques and the chance to score some amazing things at a fun auction. But when I think of SoLina Auction now, I think of one of the cutest little boys I’ve ever met.
One of the best things about being the editor of a small newspaper is the opportunity to meet people in the community that are so full of joy that they make you smile whenever you think of them, and four year old Bryce Wilson is at the top of that list for me.
I met Bryce’s mom, Corrie Stengel Wilson, when she came by the News and Press in November to ask that we place an auction her family was hosting in our events calendar, a benefit for the Spina Bifida Association. After a visit with the family, I became one of the many fans that this little guy has…a list that includes everyone he meets.
“Want a ride? I will push you!” said Bryce when I met him. He insisted that I hop on the large wheeled push cart that he was pushing down the center of the barn at SoLina, and he maneuvered away from his small walker to grasp the handles of the push cart to give me a ride.
Corrie’s parents, Cary and Tammy Stengel, run SoLina Auction on Lamar Highway in Darlington, a venue very familiar to the area and auction fans from far and near.
Cary was quick to tell me that he hopes the event will occur each year, and that 100% of the money raised will go to the Spina Bifida Association.
“The Spina Bifida Association helps him,” said Cary. “We wanted to give to them to help him and other children so maybe they can find a cure. He has a long hard life in front of him- anything that can make it easier on him would be nice.”
Corrie and her husband John live in Andrews, an hour and a half away. They learned that their son had spina fifida during the gender reveal ultrasound at 20 weeks.
“We want to make people aware,” said Corrie. “I was on the proper vitamins because I wanted to get pregnant and wanted to do everything right, and yet we still had a child with a disability. We had genetic testing done after he was born, and there is nothing proven to show what causes spina bifida; the only thing they can say is common with most mothers is not enough folic acid in the body. I had taken the recommended vitamins, for some reason my body didn’t have enough.”
“So now if we decide to have another child I will take 3 times the amount another woman would take, but there is no guarantee, no matter how much folic acid I take that it won’t happen again. So I want people to know that this can happen no matter what. Nobody really knows about it.”
Spina bifida is a neural tube defect in which the bones of the spine do not completely form, resulting in an incomplete spinal canal. This causes the spinal cord and meninges (the tissues covering the spinal cord) to protrude from (stick out of) the child’s back.
Bryce has one of the most severe cases myelomeningocele form of spina bifida; his starts at L4 – L5 vertebrae and runs to his tail bone so his defect is around his hips.
“Basically everything you read says that is one of the most severe cases. He was born with a sac on his back, his spinal cord was in the sac and therefore it’s exposed. Now for the rest of his life the only thing that protects his spinal cord from the outside world is muscle.”
Bryce has had four surgeries, but only two were spina bifida related. The first at less than 12 hours old to seal his back; he had one at less than two months old to put in a shunt for hydrocephalous which is water on the brain; he had one for strabismus for his eyes, his eyes were closing; and the fourth surgery was circumcision, as he hadn’t been after birth.
He sees two therapists once a week, and travels to Charleston for checkups with the spina bifida clinic at MUSC every six months.
“We are concerned lately with his problems with walking,” said Corrie. “At the first of the year he was walking fine, and by the first of the summer came and went he can no longer walk by himself. He wears two sets of braces, one pair pushes against the knee to strengthen the muscle to let him stand up better, and the second pair sits on his ankle to keep it from rolling. He has no control from the knee down.”
Despite all the medical issues, Bryce is a typical four year old. He knows how to spell and print his name, and has played T-ball, and is fascinated with frogs. He loves to come to Darlington and the SoLina auction to “help” his Papa, and loves when his two cousins come to visit from Norfolk VA.
“I mainly want people to see that because a child is labeled with something doesn’t mean they cannot do what you can do,” said Corrie. “They just do it differently. We’ve never renamed anything for his sake; everything is exactly what it is. He understands what the braces are for, and he accepts them. And when he wants to play in the mud…well, I let him. I just have more to clean up.”
The benefit auction was successful, and raised over $11,000. Plans are already underway for future benefit auctions, and more details may be found on their Facebook page.
To learn more about spina bifida resources in South Carolina, visit: http://www.sbancsc.org/