World Patau Syndrome Day 2016 March 13th Meet Our Families

World Patau Syndrome Day 2016 
March 13th
Meet Our Families
www.facebook.com/groups/TrisomySOFT      

www.facebook.com/groups/Trisomy13 

SOFT USA Embrace the Journey Trisomy Awareness
Trisomy Awareness Cause facebook Page
View these Precious Children Profile images
View these Precious Children Cover banners

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

Information After a Diagnosis of Trisomy 18 or Trisomy 13
Pamela J. Healey, Ph.D

The Need for Information at Diagnosis  

For parents newly facing such a diagnosis there is at least a glimmer of hope that their newborn will survive. This reality should be acknowledged by professionals treating their child. There are survivors. Despite the odds, some children with trisomy 18 and trisomy 13 do survive, develop, and become important members of their families. Trisomy 18 and trisomy 13 are not, as has been declared, “incompatible with life”, nor are the syndromes necessarily “lethal conditions”. Survival depends on the particular constellation of malformations resulting from the extra genetic material, the rest of the child’s genetic code, the medical care and interventions an infant, then child, receives in the hospital and at home, exposure and response to viruses, and probably, an element of chance. It is not understood why some children survive. Some with early risk factors and multiple medical crises during childhood, survive into adulthood. READ MORE
Families & Professionals working with Trisomy Families
Searching for the most current and updated information on TRISOMY? 
Go to: SOFT Support Organization for Trisomy 18, 13 and Related Disorders
Families caring for Trisomy Babies and Children can be found on the Facebook Support Group.
www.facebook.com/groups/TrisomySOFT
www.facebook.com/groups/Trisomy13 

Trisomy 18, Trisomy 13 Awareness Month (March) - Follow www.TRISOMY.ORG and Facebook Pages for events

ITS THAT TIME OF YEAR AGAIN. CELEBRATING TRISOMY AWARENESS MONTH
MARCH 2015
FOLLOW THE www.TRISOMY.ORG EVENTS on the website and Facebook Pages

www.trisomy.org

SOFT Support Organization for Trisomy 18, 13 and Related Disorders
https://www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders

SOFT'S Annual Trisomy Awareness Page
United and Together we Stand... Trisomy Strong https://www.facebook.com/TrisomyAwareness.SOFT

Submit your: Trisomy Child's Story &  Jumping 4 Trisomy Videos,
Purchase  tee shirts, bumper stickers, trisomy strong wristbands and more...
Create a Facebook Trisomy Awareness Profile photo and add a 

Trisomy Awareness banner to your Facebook page.

(use the facebook links above the photo)

Contact SOFT www.trisomy.org or www.trisomytalk.com for more info

Trisomy Support at SOFT at www.Trisomy.org (regarding broken url links)

These Trisomy Resources will help you find support within your Trisomy Journey

SOFT Support Organization for Trisomy 18, Trisomy 13 and Related Trisomy Disorders
www.trisomy.org - FREE Care of the trisomy infant and child EBOOK
Natalia's SOFT story

ITA International Trisomy Alliance
www.internationaltrisomyalliance.com
FREE Preparing for your child's arrival and children's books which explain the trisomy 18 and trisomy 13 facts - International translations

TRIS Tracking Rare Incidence Syndromes  www.coehs.siu.edu/tris
Ongoing study project many trisomy case studies and publications.

7/15/2014 

SOFT CHANGED SERVERS AS THEY ARE GROWING WITH ALL THE WONDERFUL
TRISOMY AWARENESS FAMILY, PROFESSIONAL AND MEDICAL CARE SUPPORT.

It will take some time for me to adjust all the LINKS on this blog going to specific SOFT areas on the SOFT website. If you come upon any broken links as you arrive on the SOFT website,  just continue to the SOFT HOME page and SEARCH for the topic you are looking for.

March is Trisomy Awareness Month

www.TRISOMY.org

Free Information & Literature for  Families:  Clicking this link takes you to a brief form which, when completed, opens a page with many free documents about trisomy.  Select what interests you and read, print or save it.    This free information includes Trisomy 18, Trisomy 13 and Other Chromosome Disorders fact sheets, growth and surgery information, an explanation of common problems, sample newsletter,  conference and book order information, and much more.   At the bottom of this home page, several helpful and inexpensive books can be ordered.  Para  documentos en español, clic aqua.

 Trisomy 18 – What is it? …click to read “Trisomy 18 Facts.“  This syndrome is a disorder of human chromosomes which occurs in approximately 1 in 7,000 live born infants, due to the presence of an extra #18 chromosome…

♥ Trisomy 13 – What is it? …click to read “Trisomy 13 Facts.“  This syndrome is a disorder of human chromosomes which occurs in approximately 1 in 10,000 live born infants, due to the presence of an extra #13 chromosome…

♥ Other Trisomy or Related Conditions:      Many families have children with other chromosomal disorders. Perhaps the best explanation for these many disorders is found in a Related Disorder Facts presentation by Dr. Stephen Braddock, Professor of Clinical Genetics, given at a SOFT Conference. Also, read about Dr. John Carey’s presentation at a  SOFT conference.   A useful video can be found here.

WWW.TRISOMY.ORG

3 Tickets for $10 or
9 Tickets for $25
Enter as often as you’d like during the month of MARCH!
Winners name will be draw by SOFT’s President, Barb VanHerreweghe on March 31st
When DONATING, be sure to ADD the term *SPECIAL TREATS JAR RAFFLE* in the Special Purpose Donations BOX right above the SEND MY DONATION button.
http://trisomy.org/about-us-trisomy/donate-to-soft/ 

* A big THANK YOU to Penny, Devon’s momhttp://trisomy.org/our-story/devon-victor/ who created this Special Treats Jar. (Valued at $80)
1) A special needs child being pushed by an Angel surrounded by flowers, butterflies, dragonflies under a Rainbow in the Heavenly Clouds
2) Heavenly Angels over the rainbow, grabbing the balloons rising to the heavens
3) Tree of Life where birds, butterflies and dragonflies gather
4) A families love is shared around the world

You can see more of Penny’s creative talents on her Facebook page Clay Cuties by Pennyhttps://www.facebook.com/ClayCutiesbyPenny

TRISOMY.ORG - SOFT E-mail Blast! - Current Events! - Hot Trisomy NEWS Topics & Updates!

Did you receive a SOFT e-mail blast within your e-mail inbox yesterday? 
5 Current SOFT Community topics of interest.
If not... Register NOW ITS FREE!!!

Join the www.Trisomy.org 

SOFT Facebook Page and SOFT Facebook Group 

March is Trisomy Awareness Month - 2013

SOFT Support Organization for Trisomy 18, 13 and Related Disorders invites you to meet our children through photos provided by their families and scripted by SOFT parent Gerri Meggett of the SOFT Trisomy Awareness committee. 

Come and “enjoy the SOFT rainbow” of life and love with words to make you smile at www.trisomy.org New photos will be featured each day of March. 

Support Organization for Trisomy 18, 13 and Related Genetic Disorders (SOFT) www.trisomy.org 

March is Trisomy Awareness Month! 

SUBMIT your Triosmy Awareness Event and Inspired IDEAS on the SOFT website. trisomy.org/trisomy-awareness-month 

Be sure to add the SOFT Page and Group to your Favorites *adjusting your notification delivery so you can see the daily activity. 

SOFT's Facebook PAGE www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders
SOFT's Facebook GROUP

www.facebook.com/groups/TrisomySOFT 

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