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Connecting with Other Families

Posted by LamonRL6 on 1/11/2009 1:20:24 AM.

I am looking to connect with other parents who have a teen age child with LMBS to share stories and questions about school, social interaction, and moving towards independence. My daughter is 17 and in 10th grade.  She is the oldest of 4 children.  The other three do not have LMBS.  However Loren is the classic LMBS child with all the clinical diagnosis and has autistic tendencies.  If you are interested in connecting- write me!  Thanks - Lisa

There are currently 2 replies.

      

  • 1 . Re: Connecting with Other Families
    Posted by adoptive mom on 05/10/2011

    I do understand some of what youu are going through. My husband and I adopted our daughter (who will soon turn 16) about 19 months ago and found out 7 months ago that she has BBS. She has almost all of the signs too. There are days that I don't know what to do. What works one day may not work the next. I hope I hear from you and maybe we can figure this stuff out.



  • 2 . Re: Connecting with Other Families
    Posted by MaribelNAPVIparent on 05/11/2011

    Thank you for taking the time to post adoptive mom.

    Laurence-Moon-Bardet-Biedl Syndrome
    Rare, inherited disorder affecting many parts of the body. People with this condition have retinitis pigmentosa accompanied by mental retardation, paralysis of the legs, and various other symptoms.

    Suggested resource: www.familyvillage.wisc.edu/lib_lmbb.htm

    You may also find Family Connects new social network site Family Friends as a great source to meet other parents faced with BBS.

    http://www.familyconnect.org/blog.asp?BlogID=1&BlogEntryID=97

    We hope that some of this information helps you as you learn more about your child's recent diagnosis.

    Thank you for allowing us the opportunity to Connect!!


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