VALERIE PERKINS

     Valerie is fourteen years old and trying out for cheerleading.  She has spina bifida (pronounced "sp-i '-na bi'-fi-da")and she's quick to tell her friends all about it.  Valerie points out that spina bifida is the second most common birth difference (Down's Syndrome is the first), and that she and her family make a real effort to use those words.  "See I don't see myself as a defect," Valerie tells her friends. "I'm different and I feel a lot better if spina bifida and other things like it was referred to as 'differences' rather than 'defects'!"  Many of Valerie's friends, especially her best friend Joanne Spinoza, ask Val lots of questions about her braces and crutches.  Valerie tells them that lots of people use braces and crutches to help them walk but not all people who use them have spina bifida.  "Spina bifida's different from cerebral palsy", says Valerie, "because people with CP can feel their legs.  I can't."  Since "bifida" means the place in Valerie's back where the bones didn't close properly, people with spina bifida like Valerie, have had to have the hole in their back closed at birth.  Valerie did, and since it was closed, she has no feelings in her back and legs-that is, in the parts of her body below the bifida or hole.  "When they closed the hole in my back they put a shunt in my head, "Valerie explains.  "See when they closed the hole spinal fluid would have backed up into my head.  The shunt works like a valve and drains off the fluid down into my stomach!"

WHAT IS SPINA BIFIDA ?

      Spina Bifida (myelomeningocele) is derived from the Latin words 'spina' meaning spine and 'bifida' meaning split or divided.  The spine is made up of separate bones called vertebrae which normally cover and protect the spinal cord.  In spina bifida, some of these vertebrae are not completely formed but are split or divided and the defective spinal cord and its coverings usually protrude through the opening.  This sac-like bulge may be present at any level on the back from the neck to the buttocks;  however, the majority of protrusions appear in the lower back.

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