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Beckwith Wiedemann
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MagentaYenta









  


Post  Fri, Aug 11 2017, 12:26 am
yogabird wrote:
It can be very hard to network about rare things when limiting yourself further by frum. And even if you do find one person, it'll just be 1 other perspective. The feeling of being in the virtual company of a bunch of moms who know exactly what you are going through emotionally, physically, medically etc is unparalleled. Just my 2 cents.


From the data I just read maybe 300 children are born with this syndrome every year. That really lowers her odds of finding frum parents.
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siyata dishmaya









  


Post  Fri, Aug 11 2017, 9:44 am
Can someone guide me to a group? Nothing normal actually came up in my searching. I contacted one group that looked competent, but they never got back to me.
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amother




Brown


Post  Fri, Aug 11 2017, 9:53 am
Most active online support groups are on FB these days. Other support forums are usually very quiet/defunct/have moved over to FB. BTDT. You have to be signed in to see and join them.
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siyata dishmaya









  


Post  Fri, Aug 11 2017, 10:17 am
I hear ya! Thats today's world. If I feel the need, I will discuss with a my rav and maybe join facebook. Thank you!
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siyata dishmaya









  


Post  Sun, Aug 13 2017, 10:23 pm
any updates with anyone who knows someone with beckwith wiedmann
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