Backtalk with Boris Kodjoe & Nicole Ari Parker

Actors share how their daughter's spina bifida changed their lives

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Audiences fell in love with Boris Kodjoe and Nicole Ari Parker when the actors first appeared on Showtime’s hit television series Soul Food, which aired from 2000 to 2004. Kodjoe, the Austrian-born model turned actor, and Parker, also a former model, were nominated for NAACP Image Awards in the outstanding actor and actress categories between 2001 and 2005. In 2004, Parker and Kodjoe starred together as a newly remarried couple in UPN’s sitcom Second Time Around. The next year life imitated art when they exchanged vows in Germany two months after the birth of their first child, Sophie. About a year and a half later their son, Nicolas, joined them.

Sadly, the joy of starting a family was eclipsed early when the couple learned that Sophie was born with spina bifida, a serious birth defect that can cause mild to severe nerve damage, paralysis, and incontinence. After the diagnosis, the couple put their careers on hold as they struggled to learn about the condition. This process led them to launch Sophie’s Voice Foundation in 2008. The foundation’s first  goal is to raise $1.8 million so that 20 children chosen by a random drawing can participate in a surgical clinical trial, which they hope will correct incontinence for children with the condition.

In an interview with Black Enterprise, the couple shared how their daughter’s condition has changed their lives, taught them endurance, and inspired them to help other families.

Black Enterprise: What gave you the courage to start a foundation?
Boris:
It was our way of learning how to cope. You’re sort of stuck and you don’t know what the future will hold and you have to transition into a whole new level of responsibility. Then you realize that you are not the only one. There are a lot of people that struggle with the same situation, but have fewer resources, less help, and less education.
Nicole: I thought it was the right thing to do. Doctors say folic acid prevents spina bifida, but what about the people who already have it? So we’re trying to figure out how to improve daily functions that we all take for granted and ease the burden on families. There’s a surgery called the Xiao procedure [developed by a Chinese urologist, Dr. Chuan-Guo Xiao] that reroutes nerves from the legs to the bladder, and they then “teach” the bladder to empty itself over time. When I learned about the surgery, I wanted to step up to the plate and try to raise money.

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