Backtalk with Boris Kodjoe & Nicole Ari Parker

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.

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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.

How can Sophie’s Voice help families?
Boris:

This is not a temporary effort. The surgical trial is our first goal, but we have goals after that. There are people who can’t afford to keep buying diapers, catheters, wheelchairs, and braces until after their kids are grown. [The average cost of raising a child with spina bifida is 13 times higher than that of raising a normal child.]
Nicole: We have to figure out how to serve families. We are not experts, but we are in it with them. Sophie’s Voice is currently planning a private introductory fundraiser in New York City this month. More long-range plans include opening a chapter in Ghana, where they’re still learning how to best care for those with spina bifida.

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How has your daughter’s condition changed your priorities?
Boris: It has turned everything upside down. It has been hard for the past four years to find our way through this maze. It’s tough because our daughter needs 24/7 care, but we still have to make movies and TV shows because that is what supports the family. You realize that all the things that stress you out aren’t really important at all. Our daughter’s health, our son, Nicolas, our family–the four of us–that is our priority in life. We also have to be meticulous about fundraising. It’s a business, but it’s quite sobering.

What are your hopes and dreams for Sophie and other children with spina bifida?
Nicole: I want her to be as self-sufficient as possible, and if she does “cath” herself for the rest of her life, I want her to be confident and take care of her health and maybe even help other young women do the same.