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Spina Bifida Doesn't Hold 3-year-old Back

By: Cierra Putman
Updated: October 9, 2012
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Spina bifida -it's the number one permanently disabling birth defect in the US. Still many families don't know what to expect when they hear the diagnosis.

The Rissberger's of Fairport felt the same way three year's ago but now they say their twin boys Alexander and Nicholas playing and laughing together.

The boys share the same birthday, but they're not identical. Alex was born with spina bifida.

"That day is really cemented in our mind forever, because you know you hear the words no parent really wants to hear," Holli Rissberger said. "You hear that something is wrong with your child."

"You get really scared and the doctor advises that maybe your best option is to not have your child and it changes your entire outlook and your hopes and dreams," Mark Rissberger said.

Spina bifida can effect the back bone and spinal cord. It can lead to mild symptoms or more severe - including partial paralysis, bowel and bladder complications. Years ago it meant a horrible life, but not today.

The Greater Rochester Spina Bifida Association says 1 in 7,000 babies born are diagnosed with spina bifida. The group introduced the Rissbergers to adults and children thriving with the defect.

"With the medical advances that they've done, children are living full and wonderful lives," Holli Rissberger said.

Alex has a physical therapist and the family moved into a wheelchair accessible home. Still, his parents say, Alex is just like any other kid.

"We camp, we go to the playground, we play outside, we chase each other around the house," Mark Rissberger said. "It's just that he uses wheels."

"My hope is that the next parent that hears that next diagnosis might remember Alex and not be so scared," Holli Rissberger said.

Because spina bifida doesn't have to hold them back.

October is spina bifida awareness month click on one of the following links to learn more.

Greater Rochester Spina Bifida Association

Spina Bifida Resource Center

Family Voices New York

Parent to Parent of New York State










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