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SOPHIE KODJOE’S STORY:LIVING WITH SPINA BIFIDA

Three-year-old Sophie is the daughter of actor Boris Kodjoe and actress Nicole Ari Parker. Sophie was diagnosed with a serious form of Spina Bifida when she was born in March of 2005. Mom Nicole says that she has blamed herself for Sophie’s condition.

“I’ve racked my brain, been to therapy, cried my eyes out with guilt,” she admits. But doctors assured her there was nothing she could have done. Boris agrees: “It was random.”

“We have gone through so many different emotional levels with Sophie,” says Boris, 35. “We had the fear of her dying to paralysis. All kinds of different monsters attacked us.”

Back in 2005, doctors told Nicole and Boris that Sophie would need surgery to detach her spinal cord from a mass called Lipoma.  After a successful surgery in 2005, Sophie is now able to live a relatively normal life. Today Sophie lives a happy life in her Atlanta home of Georgia. She still has a few complications from the Spina Bifida. One such complication is a severe urinary tract infection, a known complication which occurs in people with Spina Bifida. Sophie requires that a tube(self-catherization) be used to “get the pee-pee out”.

“We believe in the body healing itself,” says Boris. “We picked the option that gave her bladder that chance.”catheterizing Sophie every three hours, although she resisted at first, now “she sings, “Take the pee-pee out,”’ says Kodjoe. “She took charge.”

Boris and Nicole have also tried alternative therapies for Sophie, including acupressure massage, laser acupuncture and probiotic supplements to encourage a healthy digestive tract.

Nicole and Boris, who married in May 2005, also have a son Nicolas(born in October 2006). The Kodjoes  have started the Sophie’s Voice Foundation www.sophiesvoicefoundation.com in honor of their daughter.

…………..WHAT IS SPINA BIFIDA?
Spina Bifida is a developmental birth defect involving the neural tube: incomplete closure of the embryonic neural tube results in an incompletely formed spinal cord. In addition, the vertebrae overlying the open portion of the spinal cord do not fully form and remain unfused and open. This allows the abnormal portion of the spinal cord to stick out through the opening in the bones.

 

…………..WHAT IS CATHERIZATION?
In urinary catheterization, a plastic tube known as a urinary catheter (such as a Foley catheter) is inserted into a patient’s bladder via their urethra. A balloon located at the end of the catheter is usually inflated with sterile water to prevent the catheter from slipping out once it has reached the bladder

Story and Pictures Courtesy of People Magazine, January 19th, 2009 issue. Pick up the issue to read more about Sophie!

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22 Comments to “SOPHIE KODJOE’S STORY:LIVING WITH SPINA BIFIDA”

  • support.modelmanagement.com February 9, 2014 at 5:20 am

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  • sylvia deleon March 1, 2011 at 10:30 pm

    Hi boris and nicole my name is sylvia i am 45 yrs old n i have spinia bifida. i have the same type as your lil miracle. i was born n 1966 and in that era they didnt have all the technology they do now. but i remember as a child all the hospital visits and surgery’s and the fear of everyone poking and proding and the strangers looking at me. along with the strange side effects from the meds and the halusinations due to the meds i was a mess i aslo was told i would never have children but by grace of God i have 2 very healthy miracle daughters of my own. i live as a normal life i graduated high school and i am now attending nursing school you would not know i have it unless i tell you. So keep the faith because he (God) is the only one that can dictate what your lil one can and can not do. I thank Him everyday that my precious mother taught me that she was just there to show me the way to his kingdom and to lift it all up to him.

  • Upendraya October 18, 2010 at 8:20 pm

    Super-Duper site! I am loving it!! Will come back again – taking you feeds also, Thanks.

  • bubbles81 June 11, 2010 at 11:07 pm

    hi nicole and boris family. i just wanted to say god bless u and urs. u are wonderful people and i believe even more wonderful parents and nicole do not take the sole blame for your daughters condition everything happens for a reason please be blessed and continue doing wat ur doin educating women on what to do to prevent spina bifida. your a beautiful woman much love and respect to you and your family.(:

  • Judd July 30, 2009 at 1:42 pm

    This family perhaps is one of the best looking in the celebrity world. They appear to be a loving family..OMG these kids are so cute!

  • CP July 13, 2009 at 9:48 am

    FYI:

    Spina bifida is best prevented by taking 400 micrograms (mcg) of folic acid every day. Studies have shown that if all women who could become pregnant were to take a multivitamin with the B-vitamin folic acid, the risk of neural tube defects could be reduced by up to 70%.

    Since half of all pregnancies in the United States are unplanned, women of childbearing age – even if they are not currently planning to get pregnant – should take 400 micrograms (mcg) of folic acid every day to reduce their risk of having a child with Spina Bifida.

  • paris harper June 17, 2009 at 12:03 am

    wow,i know that god will give you the grace to get through this.your story is very inspirational and encouraging.i can empathize with you both because, my husband and i are the parents of 4 children,ages 11,10,9,&1 and 2 of our children have spinabifida.my 10 year old,which is our only son,and my 1 year old.there levels are both L-4″s,but strangely,our daughter diagnosis is that she will never walk. our children also have toileting issues and battles with monthly urinary tract infections.oh, and not to mention the constant visits to the hospital and countless numbers of surgeries that they have had on there hips,legs and feet.oh,and how can we forget the shunt replacements.my husband and i are very encourage by your story,all we can do is pray that god will continue to give you and your husband the grace to go through it, and we ask that you all wil do the same for us.

  • Qiana (NYC) April 6, 2009 at 2:23 am

    My heart and prayers goes out to them. I had no idea they were going through this. I pray that God will heal little Sophie’s body. It breaks my heart to see sick children.

  • Felicia March 19, 2009 at 8:28 pm

    I have never heard of Spina Bifida but I truly appreciate Boris sharing their story and may god continue to bless them and continue to allow Sophie to be strong and happy little girl.

  • Nakaria January 18, 2009 at 7:15 pm

    Tthis is such a touching story. I have never heard of such dieas until Spohie. It’s a beautiful thing that she is able to live her life as a normal kid and her parents so involved and open with her situation. Cute family, and i wish the best!!!!!!!

  • lamarreo bedford January 18, 2009 at 10:44 am

    your story will help people to understand what me and sophie have to deal with.becouse i was born with spinalbifada.and its hard sometimes.but with god and the love from my family.i made it throught.and sophie is going to be just fine.she is going to make it just like i did.

  • lamarreo bedford January 18, 2009 at 10:35 am

    thank you for the story on them and sophie i am a man living with spinal bifada.and its hard sometimes but.what i want them to know is that.her life is not over she will be just fine.just give her lots of love.that how my family and i got throught it.

  • KEEYSHAJ50 January 18, 2009 at 7:31 am

    GOD BLESS THEM

  • leo the lioness January 17, 2009 at 8:56 pm

    Sophie looks just like nicole. beautiful family

  • Nicole January 17, 2009 at 5:12 pm

    What a beautiful family! It was so transparent for this family to share their story. It just reminds people that “people are people. We all have struggles and overcome adversities at certain points in our lives. Celebrities are just like you and I. I hope that God continues to shed his light on this family.

  • Georgia January 16, 2009 at 5:39 pm

    I’m also glad that they have shared their story. She is a pretty girl and Nick is a cutie pie. She’s a strong little girl with a strong and beautiful family.

  • tight2def January 16, 2009 at 4:22 pm

    God bless them and may they continue to strive and prosper

  • Dee January 16, 2009 at 3:32 pm

    I’m so glad they have shared their story. It may help someone else. How is it that each member of that family is beautiful…haha. The kids are blessed to have such strong parents in a strong relationship.
    Viel Glück!

  • Joy January 16, 2009 at 2:55 pm

    Beautiful kids

  • MissLady007 January 16, 2009 at 10:58 am

    I think Sophie is so pretty and Nic is so handsome. He has gorgeous eyes and I love how their relationship is so solid as a family.

  • NaiyaJ January 16, 2009 at 10:55 am

    I am glad they chose to talk about this publicly because I ahd never heard of it before.

    Pretty family! Sophie is the cuteness!!

  • bria January 16, 2009 at 10:40 am

    thank u for this story, what a brave little girl. We as adults can certainly learn from our younger counterparts.

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