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TOPIC TITLE: Families here dealing with Prader Willi Syndrome?
Created On 3/2/05 9:51 PM
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yaelchai
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Joined: Mar 2005

3/2/05 9:51 PM
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I just joined this group and am wondering if there is anyone else here who has a family member with Prader Willi Syndrome? We have a 3 year old daughter who has the syndrome. She is doing great, but I am wondering how other frum families have dealt with issues such as school? Looking forward to finding others here. --Yael
 
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bmr
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Joined: Dec 2004

3/3/05 3:21 PM
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Have you seen the February '05 Exceptional Parent Magazine (eparent.com) I noticed Prader-Willi mentioned on the cover. Admittedly, I haven't looked inside yet so I don't know if there's anything of worth there...
 
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simchalady1
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1/4/06 12:44 AM
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I have a 16 old son with prader willi syndrome. He was diagnosed when he was about 3. I would like to connect with any other families who have children with prader will syndrome.

Hatzlachah, Simchalady1
 
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yaelchai
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5/11/06 9:57 PM
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I posted the original message in this section. My daughter is now 4.5 (PWS UPD) and we have since adopted another baby with the same syndrome who is now 21 months old. In addition to PWS, she has chronic lung disease, the result of her extreme prematurity.

I would like to be in touch with others who have children with this syndrome.
Yael
 
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love life
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9/19/06 10:08 PM
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Did you adopt knowing about these conditions?
 
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FORUMS > Genetics > Prader Willi Syndrome < Refresh >

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