Support Organisation for Trisomy in Australia
 
 
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About us:

If you find yourself in the world known as Trisomy then we are here to help.  SOFT Australia started in November1996, in a small house in Kirrawee NSW.  We are a small community of families supporting each other through the difficult journey of having a child living with, and potentially dying because of a Trisomy condition. 


We have biannual family conferences.  A time to get together have some laughs, educate ourselves and others, while meeting new people.  We also try to incorporate some time for reflection on those we have lost and celebration of those still with us.

 
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Our Mission

S.O.F.T. Australia exists to support families and individuals, without judgement in whatever way we can through a network of families who share similar experiences and professionals who wish to assist. We actively promote research into all aspects of trisomy, including causes, prenatal diagnosis, caring for a child with a trisomy condition, and the emotional well being of the family unit and extended family.

Learn More

 
 
 
Perth Conference 2019

Perth Conference 2019

conference 2023

Conference this year will be on the beautiful Queensland Sunshine coast. A welcome dinner will set the tone on Friday night and on Saturday we will have various speakers for Parents and carers. An outing for the younger members on Saturday morning and a memorial time on Saturday afternoon. Saturday night an outing for everyone. Sunday breakfast will round out our time together.

Friday October 20th - Sunday October 22nd - Mantra Mooloolaba - more details closer to the time

 

Memorial time

decorative butterflies

Our memorial time at conference is a very special time.


 

The many faces of trisomy

A trisomy condition can affect the chromosomes in a wide variety of ways and although there are some common attributes (particularly with Trisomy 21) no two Trisomy conditions are expressed the same. To help provide a better understanding of what a Trisomy condition can be like, we’d like to share some of our stories and introduce you to the many unique faces in our community.

 
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Louise Ruth Pass

We were completely unaware of her condition until at 1 week of age we were sent to Westmead Children’s Hospital for what we believed were routine exams due to her being breech...read more

Alicia Cunningham

Alicia was very much a night owl and loved to be cheeky keeping everyone on their toes. She was born with T18 M (89%) and was diagnosed when she was 8 days old...read more

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Madelyn Mumford

Madelyn Faith, is our beautiful daughter, little sister to Hannah who is 6 and big sister to Ari who is 1. Madelyn has just turned 3 and she has trisomy 18…read more

 
 

The Research

As a rare disease, Trisomy conditions are seldom researched and are often mis-understood or receive little funding. However there are some up to date studies available. The following paper Survival of Children With Trisomy 13 and Trisomy 18: A Multi-State Population Based Study is one of the most up-to-date pieces of research into Trisomy.

In this paper Meyer and colleagues assessed population data for babies with Trisomy 13 or Trisomy 18 who were born alive between 1999 and 2007 across nine American states. This was an extensive study which included 1,806 babies, of whom 693 were T13 and 1,113 were T18. Their study measured survival of the babies and children at intervals up to five years of age. They also reported on factors potentially affecting this including infant gender and gestational age.

 
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“

We had no contact with other families until 6 years after Louise had passed away, when we met Karen and her son Alex and together we started SOFT Australia to help support other families going through what we were.

“

Tracey D Pass | Mother, Midwife and SOFT Co-Founder

 

 

In Memory

Trisomy conditions cause a variety of developmental and health difficulties for affected individuals.  Trisomy 13 and 18 are considered to be life-limiting conditions, meaning they affect how long a baby can be expected to survive. Here, we recognise and remember those we have lost.

 
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23/01/1990 - 02/07/1990

Louise Ruth Pass

31/07/2013 - 31/03/2016

Alicia Cunningham

 

If you have someone you would like to include in our field of butterflies, let us know. You can provide as many or as few details as you’d like.