According to recent statistics, spina bifida affects approximately one out of every 1,000 newborns in the U.S. Back in March 2005, Sophie Kodjoe,4, the daughter of actors Nicole Ari Parker and Boris Kodjoe, was one of the newborns affected by the disabling birth defect. In a new interview with Black enterprise, the Kodjoes share how spina bifida has changed their lives.
On how their daughter’s condition has changed their 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.
On their 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.
On why they started their foundation Sophie’s Voice:
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.
On how Sophie’s Voice can 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.