#6
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Hi Lynn,
hoop your daughte is wel. We have a zon with Bohring-Opitz-syndrome too. He is 3 years old. i knew from 4 children in Germany with this syndrome. with one of them im in contact. Unfortunatly this little girl died last year with almost 10 months.
I'm german too. But we live in The Netherlands.
I hoop we get in contact. Sorry but my english isn't very wel.
Regards,
Sunne, the mother from Okke.



(09-02-2010, 03:35 AM)mummy night owl Wrote:
(08-04-2010, 10:07 PM)louise.cp Wrote: hi i'm new on here, has anyone got a child with Bohring-Opitz syndrome?

Hi Louise i'm new here as well. My youngest Daughter has BOS. She turned 3 this year. She too has amazed us all. Hope you will get in touch so we can talk more. Lynn x
#7
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hi there a website called unique
rare chromosone support group
http://www.rarechromo.org/html/home.asp
why not start a facebook page up youll soon find people joining up
Heart mum of 2 Heart
#8
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Hi people, I'm new to this site so bear with me! I joined after reading this post on google; my niece has Bohring-Opitz.


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