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Moebius Syndrome

Lydia - posted on 10/31/2008 ( 4 moms have responded )

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Hi all I am Lydia and my son Tony (now 13 months) was diagnosed with Moebius Syndrome whenever he was born. There are very few people in the US with this syndrome tot he extent that he has it but if there are any out there in this group that have children with this I would love to talk with you or if you would like more info on Moebius I am willing to help with any questions. Also for those that have children with Autism I have questions, we are concerned that Tony may be Autistic but doctors are unwilling to test because of physical and speech limitations that he has due to the Moebius.

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Bronwyn - posted on 02/28/2009

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Hi,



My name is Bronwyn, I'm in Australia, my son Dylan (3) was diagnosed with mebious at birth. We have been told his has a mild case. One of Dylan's biggest issues is his speech, as his tongue is underdeveloped on the left he is unable to articulate properly. He was assessed on Tues for a computer to help him communicate. He is an amazing resiliant kid and we are blessed to have him.

Claire - posted on 01/27/2009

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my daughter has moebius syndrome and i was wondering what i might be looking forward to as she gets older. she is only 4.5 months old right now and very few people are able to tell what her moods are... or at least the difference between whinning and happy talking.

Claire - posted on 01/27/2009

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my daughter has moebius syndrome and i was wondering what i might be looking forward to as she gets older. she is only 4.5 months old right now and very few people are able to tell what her moods are... or at least the difference between whinning and happy talking.

Trina - posted on 01/14/2009

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My son, Dylan has Moebius. He was also diagnosed with autism. However, all the teachers that have worked with him say they don't think he has it. They think that the symptoms were misread by the doctors and more due to the moebius than autism.

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