1. Spina Bifida

Laurisa 7 months along with baby Hope.

Isabella Hope has the Myelomeningocele form of Spina Bifida.  After 3 “normal” pregnancies, I didn’t even know what SB was when she was diagnosed with it, during my 4th pregnancy!

  • Spina Bifida is believed to be preventable.
  • An estimated 166,000 people currently live with Spina Bifida.

“Spina bifida begins in the womb, when the tissues that fold to form the neural tube do not close or do not stay closed completely. This causes an opening in the vertebrae, which surround and protect the spinal cord. This occurs just a few weeks (21 to 28 days) after conception—usually before the woman knows that she is pregnant.”

I had a personal visit with the Spina Bifida Association of Arizona.  I learned that with the children they see @ their annual events they haven’t seen  a difference in the ones who had the in-utero surgery & the ones who had the surgery after birth.  Everyone has their own story and their own journey.  Some walk, some are in wheelchairs.  There is a wide range of ways it can effect each person.  They also know women with Spina Bifida (even ones in wheelchairs) who have married, had full term pregnancies/ children of their own!

After Hope was born I participated  in the Spina Bifida Genetics research study they are doing on mothers.

 

Although it happends during the first month of pregnancy, she wasn’t diagnosed with Spina Bifida until I was I was 19 weeks pregnant.  They found this out by ultra sound.

http://www.spinabifidaassociation.org

http://www.marchforbabies.org/

SPINA BIFIDA PREVENTION FOR ALL WOMEN:  Plan your pregnancy,  start taking folic acid and improving your health a month before you conceive. 

Choose life:

John Cougar Mellencamp – John Mellencamp, also known as John Cougar and John Cougar Mellencamp, (born October 7, 1951) is best known for being an American rock singer-songwriter. As a child in Seymour, IN, Mellencamp had suffered a number of setbacks, including being born with a neural tube defect called spina bifida that necessitated a lengthy hospitalization as a baby. He formed his first band at the age of 14, and continued to play.
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Rene Kirby – Rene Kirby (born February 27, 1955) is an American film and television actor. Kirby used spina bifida to his advantage when he played his role in shallow Hal, he was also in “Stuck on you” with Matt Damon. He is the living proof that you can lead a productive life even with disabilities.

 

Lawrence Gwozdz- As professor of saxophone at Southern Miss, he has established a studio that continues to receive worldwide attention. His student soloists, quartets and saxophone chamber orchestra perform in major cities, and are frequent winners of competitions. Having been born with spina bifida, Dr. Gwozdz also is an advocate for arts for the handicapped and Very Special Arts. He also is active in the Campus Crusade for Christ’s Christian Faculty/Staff Forum. (from the USM School of Music website biography)

 

Jim LeBrecht—Jim was born with spina bifida. He is also the co-author (with composer Deena Kaye) of Sound and Music for the Theatre: the Art and Technique of Design, and has been a visiting professor at Yale University. LeBrecht has won numerous awards, including the San Francisco Bay Area Drama Critics’ Circle Award for Outstanding Sound Design, which might as well be renamed in his honor, since he’s won it five times.

Just a few examples from disabled-world.com & waisman.wisc.edu!

Jean Driscoll is a remarkable athlete.  She has won the Boston Marathon eight times.  She has also participated in four Paralympic Games and won gold metals.  Born with Spina Bifida,  Jean competes in a wheel chair.

One of Driscoll’s favorite Bible verses is Daniel  7:9,  “The ancient of Days was seated……His throne was a fiery flame, its wheels a burning fire.”  Seeing a connection between   Daniel’s vision of God and her own situation, she is able to pass along the words of encouragement to others.  “Anytime I’ve had an opportunity to talk with people who use wheelchairs and feel bad about being in a chair,  I tell them, ‘Not only are you made in the image of God,  but your wheelchair is made in the image of His throne!'”

Daniel’s vision, of course, doesn’t portray God as being impaired in motion.  In fact, some see God’s “wheelchair”  as a symbol of a just God sovereignly moving with human affairs. Other passages speak of God’s providence providing help to those who believe (Prov. 3:25-26; Matt. 20:29-34; Eph. 1:11).

Jean Driscoll’s faith in God has helped her triumph  over personal challenges.  We too can be confident that the high and holy One is near and ready to help us if only we ask (Psalm 46).  -Dennis Fisher

From the devotional Our Daily Bread, May 2012.


 

SPINA BIFIDA PREVENTION FOR ALL WOMEN:  Plan your pregnancy,  start taking folic acid and have healthy habits before you conceive.

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