One of the feelings that people have after they have learnt that their precious baby has been affected by a trisomy is loneliness. A feeling that no on knows what you are feeling.

Your friends are certainly caring, but they don't quite understand. And you soon get tired of the platitudes. You want to talk with your partner but you are afraid of hurting them more.

That's where talking to others who understand because they have been in the same position becomes a lifeline. And it is very therapeutic to be able to help others as well

There are a number of different ways that you can connect with other families - below are some that we recommend

Trisomy Online  
Trisomy Online was started in 1997 by a number of families seeking support. It is a free email based support group for those effected by a trisomy disorder. Whether you are a mum or a dad, an aunt or an uncle, teacher or family friend, you will find a wealth of information and support in a true family atmosphere.
   
Safer and more personal than message boards it allows support to be delivered right to your in-box. Even late at night there is someone there to listen. If the mail becomes too much then you can receive the "digest" version which is one or two mailings a day listed by subject so that you can quickly see if there is anything you want to read.
   
Trisomy Online is actually made up of 5 different email lists, all connected and often overlapping, but at the same time all serving different needs.
   
Tri-Med is an email group that deals with the medical issues surrounding a trisomy diagnosis. It is made up mainly of those mums and dads that have decided to continue on with their pregnancy or who have a surviving child. There are also a number of new parents who join to get "perspective" before they make a decision.
   
Tri-Wings is an email group made up of families whose trisomy angel have gained their wings. Its a warm and safe place to share your memories, where you can talk of your special angel and know that you will not be judged. A place where people care and want to share those special moments so alien to the "outside" world. Things such as sharing how beautiful your angels headstone is, "tinks" from your angel (a tink is a message our angels send to let us know they are watching over us). A place where you can cry and share that special poem.
   
Tri- Choices is a list that is more protected than most. Messages are moderated, which means that they are approved before they can be posted. It was especially set up to allow those who chose to terminate their pregnancy to provide a safe haven to share their thoughts and feelings.
   
Tri-Family is a "connecting" list. Frequently light hearted it is a list where people chit chat about their lives in general and share a joke or two. Tri-Family evolved because the lists became a family and so many people were making wonderful friendships.
   
Tri- Mosaic is a list that deals mainly with research into mosaicism. Mosaicism in trisomy is quite rare and little has been done to research this variant of trisomy.
   
To join any of these lists visit their web site www.trisomyonline.org
   
 
 
 
 
 
 
 
 
 
 
 
 

 

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While all care has been taken the information contained in this web site is not written by a medical professional and as such should not replace the valuable and personal information of your own health care professionals. SOFT does not promote or recommend any specific therapy, treatment or course of action. SOFT is an independent organisation and does not support any particular political or religious point of view. Individuals or organisations referred to, do not necessarily endorse this publication or the views of SOFT.

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