Nicole Ari Parker’s smile and no-nonsense spirit warmed our hearts in the series adaptation of the hit movie “Soul Food.” And when we found out that her on-screen co-star, Boris Kodjoe, were in a real relationship off screen, it seemed as though nothing was stopping Nicole. But she and her husband reached uncharted territory upon the birth of their daughter Sophie. Sophie was born with spina bifida–a birth defect that involves the incomplete development of the spinal cord or its coverings.
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At first, she admits she was frazzled. But as a mother and a wife, she’s learned many lessons that we all can benefit from:
“I think Sophie is so strong, but part of the anxiety was the normal mom worrying about the future,” Nicole says. “Okay, how is this going to happen? How are we going to get to school? How do we explain to the teachers that we have to show up every 3 hours and interrupt her and get her attention and say ‘Let’s go to the bathroom?’ What about her friends? What about when she starts dating? She can’t do sleepovers. She still sleeps in a diaper. What about the questions?”
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The mother of two said she’s learned to overcome her anxiety by taking things one day at a time. “Someone said, ‘Answer the question that’s asked.’ Meaning, don’t worry about what’s going to happen when she’s 14. If a 5-year-old classmate comes up to you and says, ‘Mrs. Kodjoe, why are you always here?’ and I say, ‘To help Sophie go to the bathroom.’That’s the answer to the question. And you know what happens? They all go, ‘okay.’ And I don’t have to put any more on it. So that was the beginning of my healing process was each day at a time.”
“With Sophie’s Foundation, we are extremely excited and motivated to be a voice for those unheard, and to provide education about prevention and a possible cure for this most preventable birth defect,” beams Nicole.
Sophie’s Voice Foundation was founded in honor of their daughter. By dedicating themselves to a healthy lifestyle they found ways to address not only their daughters mental, physical and medical needs but also the needs of their entire family. Nicole and Boris have committed their resources and celebrity to educating multicultural communities worldwide on the importance of families working together to build healthy lifestyles one day at a time.
Spina bifida occurs in three forms, each varying in severity.
1.) Spina bifida occulta
This mildest form results in a small separation or gap in one or more of the bones (vertebrae) of the spine. Because the spinal nerves usually aren’t involved, most children with this form of spina bifida have no signs or symptoms and experience no neurological problems.
Visible indications of spina bifida occulta can sometimes be seen on the newborn’s skin above the spinal defect, including:
- An abnormal tuft of hair
- A collection of fat
- A small dimple or birthmark
Many people who have spina bifida occulta don’t even know it, unless the condition is discovered during an X-ray or other imaging test done for unrelated reasons.
Also known as open spina bifida, myelomeningocele is the most severe form — and the form people usually mean when they use the term “spina bifida.”
In myelomeningocele, the baby’s spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby’s back.
In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.
