Living Life to the Fullest

9 years 2 weeks 3 days ago November 18, 2007 Nov 18, 2007 Sunday, November 18 2007 Sunday, November 18, 2007 5:23:58 PM CST in News

More than 1,500 American babies are born each year with the spine deformity spina bifida, and Tori Boyles is one of them.

"I first met Tori when she was about 15 days old. She was in the pediatric ICU at the University and I had been asked to be her foster mom because she had multiple disabilities, the primary one of which is spina bifida," Tori's mom Becky Boyles said.

Tori has permanent nerve damage as a result of spina bifida, which had looped her spinal cord outside her body. The deformity can leave children with varying degrees of muscle paralysis, bladder and bowel problems, loss of skin sensation, and spine and limb problems.

But thanks in part to Easter Seals, Tori and Becky are living life to the fullest.

"With Easter Seals and United Way's help, I am raising a very strong little girl who is going to grow up to be a very strong and successful woman," Becky said.

Tori goes to public school and takes part in the Easter Seals before and after school program. The Easter Seals program in Columbia serves about twenty percent special needs children and there is also a center in Jefferson City. It helps families with things like medical rehabilitation, job training, and child care.

"They understand what it's like," Becky said.  "We share a philosophy about parenting children with disabilities, that they deserve everything that we deserve."

The National Institute of Neurological Disorders and Stroke said doctors don't know the exact cause of spina bifida, but they do know it happens within the first 30 days of pregnancy.

Taking 400 milligrams of folic acid before preganancy and during the first trimester can help prevent it.

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