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.
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.
This article originally appeared in the September 2009 issue of Black Enterprise magazine.