Welcome to Rainbows Down Under!

My rainbow on the web dedicated to families and children everywhere who are effected by Trisomy 18 and other rare Trisomic disorders.

This special rainbow was given to us by Sue
It's a real Aussie rainbow from Portland, Victoria!

The main focus of this site is Trisomy 18, Trisomy 13 and other related chromosomal disorders.

The reason for my interest in these disorders began in 1994 when I gave birth to the most beautiful little boy, Alexander. Alex was born with Mosaic Trisomy 18. He is now 15 years old. An amazing, remarkable young man who continues to inspire and delight all that know him.

Alex whilst on holiday in Tasmania as a guest of Appin Hall Children's Foundation aged 11 years

After I received Alexander's diagnosis, I, like so many others went looking for more information and support. Sadly I found very little here in Australia where we live. What was available tended to be very medically orientated, negative and, as I found out, quite outdated. Eventually after much searching I discovered SOFT (Support Organisation For Trisomy 18, 13 and related disorders). My life changed dramatically, at last I found understanding and information.

Talking with other parents and reading their stories helped me so much. However the paucity of accurate information about Trisomy continues to distress me. These pages are my attempt to link others and help spread more accurate and up to date information about Trisomy and related disorders.

Grab yourself a cup of tea, sit back and enjoy your visit. I hope that you will find this site educational, rewarding and an inspiration to

What's New?

On 16th September 2009 a landmark new study was released that may shed new light on the cause and therefore we hope the prevention of human chromosomal birth defects.

The research was completed at Florida State University by Hong-Guo Yu is and published in the Journal of Cell Biology

"Long term, we hope to achieve a comprehensive understanding of the molecular mechanisms behind chromosomal birth defects and see our research contribute to the creation of targeted interventions during meiosis."

Hong-Guo Yu
Florida State University Department of Biological Science

To read more about the study please visit the web site of Florida State University

To purchase a copy of the study please visit the Journal of Cell Biology


 

 

What is a Trisomy?

A brief explanation of what a trisomy is

What is Trisomy 18?

A brief explanation of what exactly Trisomy 18 is.

What is Trisomy 13?

A brief explanation of what exactly Trisomy 13 is.

Alex's Story

The story of my son Alex who has mosaic trisomy 18

Tribute to Paige

A tribute to a very special friend and fellow traveller, who proved that all things are possible - Paige Barton (Trisomy 18 mosaic)

In memory of special friends

A special memorial to special friends who could not stay

The Trisomy List

A free on-line e-mail based support group for all "flavours" of trisomy

How to talk to others?

Chats and other ways to connect with others

Links

Links that I have found to related sites

Shapiro's Syndrome

Alex has been given a secondary diagnosis of Shapiro's Syndrome - What is it?

Special Occasions

The holidays can be hard - my tribute for special friends on the holidays

Awards that we have won

Special awards that we have won

Books

A list of books that others have found helpful in dealing with a Trisomy diagnosis.

SOFT Australia

A support group for Trisomy and related disorders in Australia

Growth Charts

Imperial & Metric growth charts for children with T-18 & T-13

Click here to see Alex's Newsclippings!!

 

Search The Internet

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The music playing on this page is "The Rainbow Connection"

Click on the rainbow to view the words

I really do like to hear from people and while I will always do my very best to answer any private e-mails I do ask people to remember that I have a full time job caring for Alex and sometimes my responses are not as timely as I would like. Occasionally if I am really busy I may also forward mails onto friends who I think will also be able to help. I really do appreciate your understanding in this.

This Trisomy Net Ring site
is owned by Karen Schuler.

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 | Home | What is a Trisomy? | What is Trisomy 18? | What is Trisomy 13? |

|Alex's Story | In Memory of Special Friends | Tribute to Paige | Books and Resources |

| Special Occasions | Awards | Shapiro's Syndrome | SOFT Australia | The Trisomy List | Links |

 This page last updated 24th September 2009