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From: Ed.Madara@f140.n150.z1.fidonet.org (Ed Madara)
Newsgroups: misc.handicap
Subject: Coffin-Siris syndrome
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Date: 18 Jul 90 20:54:36 GMT
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Index Number: 9286

Anita's daughter, Jacqueline, was recently diagnosed as having 
Coffin-Siris syndrome, a disorder characterized by unusually small 
stature, along with mental retardation and possible craniofacial 
abnormalities.  The doctors paint a bleak picture and have advised Anita 
that that Jacqueline would never be able to care for herself and that she 
should place her daughter in an institution. Anita and her husband want 
to care for Jacqueline at home.  
>
Anita would like to share experiences with other parents who have or have 
had children with Coffin-Siris syndrome.  When she called us and found 
out that there was no support network currently available for this 
particular disorder, she said she would be interested in joining with 
other interested parents to start one.  If you know of any parent who 
would be interested in participating, or any professional interested in 
supporting such an effort, they may contact her, Anita Ball at 162 
Abernethy Drive, Trenton, N. J. 08618.
>
>   Ed at the American Self-Help Clearinghouse

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