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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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Trisomy13Archive.com


This is an archive of the LivingWithTrisomy13.org site (2005-2010) for current information please see:
http://www.livingwithtri13.org

To UPDATE AN ALBUM
please email Vanessa@livingwithtri13.org

Healthcare Professionals
Literature & Packages for Patients

   

SOFT Support Organization For Trisomy 18, 13, and Related Disorders
A Guide For Professionals A package of information given to SOFT families can be sent to you by calling National SOFT headquarters at 1-800-716-7638 or writing SOFT c/o Barb VanHerreweghe, 2982 So. Union St., Rochester, NY, 14624 (E-mail: barbsoft@rochester.rr.com)

Prenatal Diagnosis Information Package - Compiled by Kylie Sheffield (mum of Daniel, full Trisomy 13) in consultation with families on this web site
   
ESSAYS BY TRISOMY 13 PARENTS Free literature to share with your patients

Misgivings  By Barbara Farlow, mom to Annie
© 2009 The Hastings Center, Reprinted by permission. This article originally appeared in the Hastings Center Report, vol. 39, no. 5 (2009): 19-21

WHEN WHAT SEEMS BROKEN IS PERFECT By Barbara Farlow (Annie's Mom)

PATIENT CENTERED CARE Barbara Farlow, mom to Annie spoke at the University of Toronto in the First Annual Sue MacRae Lecture On Ethics and Patient-Centred Care - June 11th, 2008 CLICK TO VIEW NOWW

The decision to accept disability: One family’s perspective By Barbara Farlow BEngSci MBA

A Letter to: Pediatric Physicians, OB-Gynecologists, Geneticists & Healthcare Providers, from ThereseAnn - A parent of a Trisomy 13 child

How Our Babies have changed our Lives by Maria Demers

Trisomy 13 ~ A Printable Handout
A Mother's letter to newly diagnosed Families

Message to All Obstetricians & Perinatologists
Message to  All Physicians, Specialists, and Doctors Alike  by Mary Mabeus

Letters to Physicians
-Trisomy 13 Survival Tactics
-Patients Plan of Care - Faith in Action
-Considerations in Making a Specified Plan of Care
by Janina E. Arritola

How can anyone say that these children do not contribute to society, therefore what is the point??
by Melissa Roy

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
 All information found on this site was submitted to us directly by the families
and used on this site with their permission.
Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 
 

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