You Can Help CREATE CHANGE in how Trisomy kids are Medically Treated by SHARING YOUR FAMILY Trisomy 18, 13 or Trisomy Related Disorder STORY

SHARE Your living trisomy Family experience on SOFT USA. 
Support Organization for Trisomy 18, 13 and Related Disorders

SOFT USA is the one website Families & Professionals go to when looking at the most current literature on Living Surviving Trisomy kids. The National Library of Medicine NLM and the National Institute of Health NIH Share the SOFT website as the 33year strong website supporting Families and Professionals. Your childs' story trisomy medical issues and experience will make a difference for families to follow.

TRIS Tracking Rare Incidence Syndrome

Be sure to enter the Data (Survey) on Your Trisomy Child to help with the most current Evidence Based Medicine Treatment and Practices for our Trisomy Children

Noahs Never Ending Rainbow  "Noah's Never Ending Rainbow continues to be a support when most other organizations stop giving. They not only care about the person affected with this horrible disorder but also the family."  
Read More...

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Celebrating Trisomy Survival ADvertising at its Best!

I just love this !  I believe this is one of the largest visual efforts in image of Trisomy Awareness - technology at its best! Happy Birthday Giuliana, you are looking very healthy - sharing what Trisomy Health and Wellness can be! Beautiful!
~ and Happy Birthday!

June 4, 2012 Raising It to New Heights (click for photo on Jill & Giuliana's blog)

"For Giuliana’s  2nd birthday announcement, we now proudly display THREE 10x 22 huge digital billobards spaced throughout high traffic areas in the city. "

"It has always been our mission to help advocate for those who face Trisomy 13/18 and are not offered options other than Hospice, as we were not.  Parents need to hear both sides of the story, and remember to keep realistic in the approach to this diagnosis. Families have a right to unbiased information upon which to make critical decisions related to their child. Realizing that there is a great spectrum involved and sadly some children with Trisomy 13/18 may not survive, still others may only live a short time. Now, new evidence is showing that in many cases intervention can help more children to live longer lives."

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

A new book ~ What Every Woman Needs to Know About Prenatal Testing

Amy Julia Becker Thin Places Faith, Family and Disability - opens the discussion regarding her new book, share your experience and or thoughts to help her cover all the unique situations women find themselves in... Thank you for your input.

My Next Book? What Every Woman Needs to Know About Prenatal Testing

Many of the comments already offered are interesting...

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

SOFT - Trends in Healthcare, Professional Viewpoint, What does "rare" disorder mean? and Publications

SOFT USA - has added Page Updates
Please go check out all the articles and information they are adding to the website pages.

• Trends in Healthcare
• Professional Viewpoint
• What does "rare" disorder mean?
• SOFT Publications

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

The Ultimate Trisomy Information Center for Trisomy 18, 13 and Related Disorders

SOFT USA - The Largest Global Trisomy Network of Support 
Supporting Families for 25 Plus years with Trisomy Related Syndromes 

Pam’s Papers:  Research and Commentary Papers about Children with Trisomy Disorders, written by SOFT Member Pamela Healey, PhD. http://www.trisomy.org/resources/pams-papers

What Should We Do Now? Necessary Information After a Diagnosis of Trisomy 18 or Trisomy 13  

The Medical Intervention Debate   

The Culture of SOFT 

and more.....

International SOFT Support Sites
America USA
Australia
Canada
England
Germany
Ireland
Italy
Japan
New Zealand
Romania
Scotland

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

The SOFT Times (Quarterly Newsletter) just arrived today in the mail.

I highly suggests you join this wonderful Global Support Network. 
To Receive yours send $25.00 to SOFT ~ Supporting Trisomy Families 25 PLUS years.
SOFT Membership Information


The SOFT Times - A newsletter for families with children who have chromosome disordersThe SOFT Times newsletter has helped connect families for nearly three decades. Letters from families and articles from professionals are compiled, edited and printed in a quarterly newsletter, which is mailed to SOFT members who have paid their current yearly membership fee, and to professional members. Read More on the SOFT website 

SOFT Sample Newsletter
Past SOFT Times Newsletter topics

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Signing Drink -- Right on Q

Today while feeding Natalia, I asked her how to say drink.. you know we are working on this talking thing with her this year... so What does she do... ?? She points to her mouth... Correct! Drink!... Where did she learn that? We haven't been doing sign language for awhile... (?maybe school?)

So I told her to show dad drink and sure enough, she pointed to her mouth again.. the funny thing is she drinks through her G-tube!!!!! :) 

Oh such a smartie...we're going to really mess with the literature they write on these kids... the will of the human spirit and lots of healing prayer.... and lots of God's Graces...

Also did I tell you Jacob broke his wrist while skiing? Yep, he now has a cast on his right hand.. he's adjusting.

Nick is ASB VP and always on the go... Playing Volley Ball and all... and Jacqueline is now 20 yrs old.. where does the time go... one day at a time...
***********************************

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org

Introducing Natalia

Where do I begin?...My life was forever changed when we received this wonderful gift of love... 

OUR NATALIA... while all my children are amazing, this little one has helped me to live what I do believe is my life mission.  Helping others to Embrace these lives...for as little or as long as we are blessed to have them on this earth.

I share this photo of Natalia with her cleft lip as I loved how she arrived. So pure, so unexpected, so broken, so unique, so worthy of loving and living. She is a gift to my life, our marriage, our family.

I hope you'll enjoy hearing from time to time about our Trisomy 13 - Patau syndrome journey.

Natalia 5years old - Full Trisomy 13 - Patau Syndrome - Kindergarden at Blind Children's Learning Center, Tustin, California http://blindkids.org (*I highly recommend this Early Intervention Program for the Visually Impaired)

*At birth we were told of the Causes of Trisomy 13. We were told the risk factors, prognosis, and life expectancy. We chose medical treatment, looking at each individual medical symptom. Choosing to treat the symptoms not the syndrome.

One day at a time, we have Triumphed over Trisomy 13! We've added our list of Medical Surgery Interventions to the SOFT Trisomy Surgery Registry

SOFT has been supporting Trisomy Families for 33 + Plus years

For Trisomy 18, 13 and Related Support, Please see the SOFT site for a NEW Family Packet http://www.trisomy.org
Be sure to look for the FAMILIES drop down MENU to view 100's of trisomy Family Stories.

Natalia's SOFT family story http://trisomy.org/?our-story=natalia-marie