Discussions By Condition: Medical Stories

mom of a very special lil girl

Posted In: Medical Stories 2 Replies
  • Posted By: fire_dawn2001
  • November 26, 2008
  • 03:01 AM

I'm a mother to a very special lil girl, she was born with what they are calling sacral regression, she was born with only about half of her spine, her spine and spinal cord stops at T9. She has no lower lumbar at all, she also has bilateral webbed legs, and bilateral club feet, with other problems as well, as fare as we have found there are only 5 other people in the world that have this, there are 3 in the US and 2 more in other parts of the world, but from what we have been told there is only one group of doctors that have worked with this before and they are in Okalahoma but we don’t know how they are, but are trying to find them or some one that also has this and can give some kind of a guide, or any kind of help please please let me know we have lots of good doctors work very ******n her trying to help but they just don’t know anything about this or how to treat this, so if any one can help me please let me know :rolleyes: ????????

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2 Replies:

  • Paul C. Francel, MD, PhD* * Chief, Pediatric Neurosurgery, Children's Hospital of Oklahoma,Childrens Hospital Oklahoma940 NE 13TH St Ste 2B2311Oklahoma City, OK 73104-5099Phone: (405) 271-7086
    Monsterlove 2921 Replies
    • November 26, 2008
    • 05:59 AM
    • 0
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  • thank you for the INFO i will be calling them first thing monday morning, thank you form me and thank you from my lil girl, ;););)
    fire_dawn2001 1 Replies
    • November 27, 2008
    • 00:12 AM
    • 0
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