Nicole Ari Parker, Boris Kodjoe Fundraising For Spina Bifida Study

09/10/2008 at 10:30 AM ET
Frederick M. Brown/Getty

Late last year, Nicole Ari Parker and Boris Kodjoe revealed that their eldest child — 3 ½-year-old Sophie Tei-Naaki Lee — suffers from Spina Bifida, a developmental birth defect which results in an incompletely formed spinal cord. Now the couple are reaching out to family and friends with the hope of raising funds for a special surgical study that might hold the key to curing their "miracle child."

Since her birth, Nicole and Boris have provided Sophie with round-the-clock care. Although her symptoms are less severe than others with Spina Bifida, she does require special assistance as a result of a spastic bladder, including catheterization every three hours to prevent urine backflow into her kidneys. Frequent catheterization often causes urinary tract infections, however, resulting in the need for antibiotics that can disrupt the flora balance of the bowel — leading in turn to more infections. Writes Boris on his official website,

"It’s a never ending cycle and the prognosis from specialists all over the world is a life long dependency on catheterization and diapers, unless we’d agree to a bladder augmentation, which is quite risky and not a way we want her to live. While being a simple body function for able-bodied individuals, these activities may take hours for children with Spina Bifida."

Click ‘more’ to read about a surgical procedure yielding "astonishing results" for children like Sophie.

Through the Spina Bifida Association of Georgia, Nicole and Boris learned that a physician in China has developed a technique for surgically re-routing nerves from the legs to the bladder, so that the bladder eventually learns to empty itself. According to Boris the surgery — known as the Xiao Procedure — has been carried out "with astonishing results" both in the United States and abroad. As a result, officials at several Atlanta-area hospitals and universities have banded together to supervise the first phase of a surgical study of the Xiao Procedure, which will involve 10 children at a total cost of $1.88 million. Writes Boris, 

"This has been Nicole’s and my priority, and now this procedure can change a lot of families’ lives. But the first phase of this surgical study is not funded, and therefore we are in this alone. Based on a successful outcome of phase one, phase two and the surgical study of 100 more children would receive federal funding…Please, please, please give as much as you possibly can to help make this a reality for thousands of families and their children affected by Spina Bifida."

Nicole, 37, and Boris, 35, are also parents to 22 ½-month-old Nicolas Neruda.

For more information on the Xiao Procedure and to find out how you can contribute to the first phase of the surgical study, click here.

Source: Boris Kodjoe Online

FILED UNDER: News , Parenting

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Brandi on

Wow, how touching. I hope they are able to raise the money they need for the study. It could have such positive results if successful.

MB on

I hope it works out!

erika on

Boris is one fine man… I have seen pictures of him that makes me drool! Nicole is lucky!

Nikka on

What a touching story and what dedicated parents. What is the origin of the name “Tei-Naaki Lee “?

Lael on

I have Spina Bifida and cathing every 3 hours has never been a problem (or inconvenience) for me or my parents. It takes just as long as a regular person would go to the bathroom, MAYBE a minute longer. So to the quote of “may take hours”, that is a lie. Simple misinformation for first time parents of a disabled child, I’m sure.

Maybe I’m alone in this opinion but perhaps they should raise the money elsewhere for Spina Bifida children who can’t afford even simple supplies that insurance won’t always cover.

SH on

Why shouldn’t they want to raise funds for a study that could positively affect their daughter? If it’s successful, wouldn’t it help others in the future with spina bifida?

Tammy's Tupperware on

I was born with the worst form of Spina Bifida 40yrs ago and back then the medical technology wasn’t like it is now. It’s nice to see they are being proactive in their daughter’s care. However, they make everything seem so negative IMHO. To me it’s all in how you choose to live your life. I choose to think about the things I can do, not what I can’t. I live a very normal independent life because it’s just who I am and how I was raised.

fay on

tei naaki is a ghanaian name, boris is half german and half ghanaian… i don’t remember what it means though…

wasn’t there son nicholas diagnosed w/ some sort of neurological disorder?

SouthernBelle on

I remember seeing pictures of both of the children of Boris and Nicole. They are absolutely beautiful babies. I had no idea Sophie was born with Spina Bifida and wish them all the best care in the world and much success in terms of research. Beautiful family.

Nana on

I was born during a time when only 12% of spina bifida children survived. I had my initial surgery at three years of age in Chicago when they would only allow parents to visit every Sunday. At 21 I had a urinary diversion and subsequently married, got my degree, worked 40 years as a Med Tech, had three children and three grandchildren and had one child who attended Yale. I was told in 1966 that they were working on a bladder pacemaker and they are still working on it. My point is I have been very fortunate. I am no longer able to work but enjoy my family. I have had a very blessed life so I was very surprised when recently I was told I was severely disabled. Who knew? I was fortunate because my family never told me of my limitations. Honestly, my inherited migraines have been worse for my career. Treat kids normally and love them unconditionally. Good luck, Nana of Three

LaShawn Armour on

I have a Spina Bifida child who is 9 and I can relate to your fight for this type of surgery. My daughter shares the same situation with catherization and infections. It is hard trying to teach her how to Cath herself. She is a rare case too but she still have had many surgeries. I hope you are able to raise the money so other families are able to chose this type of surgery. I will be praying that all types of needs are met in caring for disabled child.

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