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PARENT'S GUIDE & OWNER'S MANUAL
MODEL: MOEBIUS SYNDROME

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COMMENTS BY PARENTS & 'OWNERS'
Comments

 

I love the work you've done on this site, it's a godsend to anyone looking for help, and
a couple of people have found me and I've been able to help them find information and
support!   Thanks!
Gena

    

I live in the UK and am presently a single parent.   I have an eight year old daughter with classis moebius syndrome
I have had to deal with the problems of muscle tone (involving physiotherapy) - speech problems (involving speech therapy ) - eye surgery (successful) from an early age - decaying teeth having to be removed almost at the stage of eruption, and subsequent treatment - feeding problems at birth - financial difficulties - coping with ignorance - and most recently behavioural problems
 
I believe that I an my amazing daughter have met, and mostly overcome, a lot of problems - although I am aware there is a long way to go
 
I know how it feels to have a child diagnosed with moebius syndrome - and to be told by a lot of doctors that you probably know more about moebius than they do
 
This is a learning curve, and any help I can give to others I will gladly give 
 
Thanks
Morag Wight
 

It may help the parents of moebius children to contact their local Social Security office and apply for SSI. My daughter Heaven recieves SSI Disabilty with Medicaid here in Texas and I'm sure other states offer it also. They will want a complete medical history on the child from all doctors but it's worth the paperwork to never have to worry about the medical bill.                     

DEBBIE CRANFORD

My child was born sept 3, 2002.  I am his mother and he was diagnoised with moebius syndrome at five days old.  He is fed with a haberman feeder.
 
ledell Kendall
adamledell@shaw.ca

Hello.  I am a mother of a 16 year old son. I was told about this web. I am really glad to be of any help I can. My son was not diagnoised until he was 2 years old.  The doctor knew something was wrong right from birth, but it took the following 2 years before  we were told what it was.  I would like to talk to parents who are just finding out about their child with MoeBiuse, so I can hopefully help them with information. When I was told about this..there was no one that knew anything about it until I was told of a woman who lived an hour away from us. What I learned I learned from her. I believe she has done alot since then to reach other people about or with this syndrome.  My e-mail address is at  : cmost26@mailexcel.com   Thank you for this opportunity to help some one else.  

 

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