SCARBOROUGH – Spina bifida is the most common, permanently disabling birth defect in the United States, according to the Spina bifida Association, a national nonprofit raising awareness and research funds.
Spina bifida literally means split spine and the condition occurs when a baby is in the womb and its spinal column does not close all of the way. Every day, about eight babies born in the United States have spina bifida or a similar birth defect of the brain and spine, according to the national association.
Now a local family is fighting back by taking part in a fundraiser scheduled for June 15 in Scarborough. The event, called the Walk-n-Roll, is being sponsored by the Spina Bifida Association of Greater New England and the Sites family of Old Orchard Beach.
The local Walk-n-Roll, which is being held for the first time in Maine, will take place at the Rock Church, located at 66 Gorham Road in Scarborough. Registration begins at 9 a.m. and the event kicks off at 10:30 a.m. The goal is to raise a total of $70,000 at the three walks being held, including two in Massachusetts.
Karen Sites’ son, David, was born with spina bifida. He had an operation soon after birth to repair the hole in his spine and he is now an active 9-year-old who enjoys playing baseball and going to school.
After her son’s diagnosis and subsequent treatment, Sites joined the board of the Spina Bifida Association of Greater New England. She’s been instrumental in bringing the Walk-n-Roll event to Maine this year and hopes people will turn out to “support families and individuals living with spina bifida or caring for someone who does.”
In addition to the 1.5-mile walk, the Walk-n-Roll includes activities for kids and free food, Sites said.
According to the Spina Bifida Association, the condition can generally be treated with surgery within a couple days of birth and most people born with the defect can participate in normal life activities.
However, those born with Spina bifida can suffer from a variety of mental and social issues, according to the national association. Those with the birth defect can have problems walking normally, going to the bathroom and with obesity, gastrointestinal disorders, learning disabilities and depression, the association says.
“With help, children with Spina bifida can lead full lives. Most do well in school, and many play in sports. Because of today’s (treatment) options, about 90 percent of babies born with Spina bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent play sports and do other fun activities,” the association website says.
– Kate Irish Collins
David Sites was born with a hole in his spine. Here he’s pictured right after the operation that closed the hole. Now the Sites family is on a mission to educate others about spina bifida, a birth defect that affects the brain and the spinal cord.
Now, a healthy, active 9-year-old David Sites enjoys playing baseball.
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