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Thread: Hellooo Moebians!!!

  1. #1
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    Default Hellooo Moebians!!!

    Hellooooo, no one posts here & I KNOW there are Moebians out there, why don't y'all communicate??? Communication isnt just for Moebius Conferences....just sayin. :) Just TYPE something..talk bout ur life, ur Moebius experiences, how happy you are, sad, whatever, just talk. The man put these forums here for a reason, to get us all talkin. lol :)

  2. #2
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    well if you want a lot of talking people, go to the emotional support forum, lol. all kinds of folks with health and emotional troubles meet there. a supportive group. i hope others will join in here tho so just wanted you to not feel so alone. take care and come back and visit. i would have to look it up or you could just tell how it affects you.

  3. #3

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    Hello to all. I am the father of a 23 year old with Moebius Syndrome. It becoming increasingly apparent that she is slipping into a mode of self -pity and depression. I have said everything a father can think of saying to help his child get through the rough spots but I'm afraid my words fall on deaf ears. As a recovered drug addict, I know in my heart that the only true help can come from others whom know where you are coming from. It is in this light that I'm hoping my daughter reach out and get involved, She has so much to offer. She is bright and beautiful and funny and kind. She suffers needlessly thinking she is alone. I'm here to ask you to help her get involved and let her know that she is not alone. If anyone is interested in befriending her, please send me an email or let me know here. I'll give you her FB link [URL="https://www.facebook.com/shanagle [/URL]and maybe you all can go from there.
    Thanks for listening >>>--->Matt Nagle

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  5. #4
    Distinguished Community Member agate's Avatar
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    WELCOME, vwhead77,

    I wish I could be more helpful about your daughter but unfortunately I am only a participant in the multiple sclerosis section of BrainTalk and have very little knowledge of other conditions.

    Since Moebius syndrome is extremely rare, have you tried the organizations that have been set up for rare disorders? The one I know of is this one:

    http://rarediseases.org/rare-diseases/moebius-syndrome/

    If she's able to use the Internet, she might find participating in a forum (like this one) to be helpful as a way of making contact with people. Or there are message boards for any interest or hobby or cause you can think of.

    I hope that you'll have more replies.
    If you don't know where you are going, any road will get you there.
    --Lewis Carroll

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

  6. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((vwhead77)))))) ~

    To BrainTalk!

    As a parent of children with a disabling condition, I certainly understand your deep concern for your beautiful daughter, Shay. I think that she is at a particularly vulnerable age, which may be a contributing factor to her low self esteem and depression.

    Unfortunately, this forum has been inactive for some time. I suspect that part of the reason is that Moebius Syndrome is quite rare, which means that there are fewer people, who might search for or find this forum for communication and support.

    To give me some background on Moebius Syndrome, I did a bit of internet researching, and I also read the posts here on this forum, one of which was written several years ago by a young woman, who was 22 years old at the time. For you, this thread might provide some insight as to what Shay is enduring now.

    http://www.braintalkcommunities.org/...1774-F-my-life

    And several of our members replied with support and suggestions, so read the entire thread for their thoughts, which might also help you to help Shay.

    Also, I invite you and Shay to join us on the Child Neurology forum:

    http://www.braintalkcommunities.org/...hild-Neurology

    There you will find parents of children with neurological conditions, as well as several adults with Cerebral Palsy, who are quite successful in their professional endeavors and social activities.

    We don't know what it is like to have Moebius Syndrome, but we do know what it is like to be different.

    So, please post a new thread on Child Neuro, introduce yourself and Shay and join in our discussions. You are among friends, here.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #6

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    I just checked her on Facebook and we have a lot of mutual friends in the Moebius community in common, so she's in touch and knows there is a vibrant Moebius online community. That was going to be my first suggestion!

    Have you or she attended a Moebius Conference lately? The next one is in July in Los Angeles - if you are a first-time attendee there are scholarships to attend. Meeting others is a great help.

    And in case anyone reads this in the next few days, Moebius Syndrome Awareness Day is Sunday January 24!

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