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dose anyone else have a baby with this condition??

hello, my name is ashley. i'm a mom to two boys sky whos two, and kyvn who's nine months. kyvn has a really rare condition he docs can't really tell me much about. he has micro deletion of his 3rd and 10th cromosome. he's missing his corpus collosum. has PVL, and CP. he's developing slowly but surely with really low mucel tone, but a lot of fat! his brain isn't fully developed, it's smooth. and his lungs are very under developed. with a low immue system. the docs said he's the second one in medical history to have these cromosome missing. i was just wondering if anyone else out there has a child similier to his condition? or maybe missing there corpus collosum?
it would be nice to find some parents going through this as well, thanks!!

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rokinmommie22

Asked by rokinmommie22 at 5:56 PM on Mar. 26, 2009 in General Parenting

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Answers (3)
  • wow.Never heard of this,but I wish you all the best.Hope you find someone to relate to.
    TMJ121099

    Answer by TMJ121099 at 7:39 PM on Mar. 26, 2009

  • I know there's a young woman who just had a baby girl that's missing her corpus collosum. She is, however, on Opendiary.com her handle is Sophia's Blessed Mom Maybe you could set up an account there and find her. people on Opendiary are very nice and supportive!
    Anonymous

    Answer by Anonymous at 7:41 PM on Mar. 26, 2009

  • I see that this post is almost a year old but I just found out my baby has a missing corpus collosum.. so if you have any advice or want to talk let me know =)
    mrs.sarafin

    Answer by mrs.sarafin at 6:32 PM on Feb. 10, 2010

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