Trisomy 13 Syndrome ~ Patau Syndrome ~ Life Expectancy ~ Medical treatments and care for children - a free download!

www.trisomy.org 

Having a Living Survivor with full trisomy 13, www.Trisomy.org is my go-to site for the last 15 years when searching for family support information or professional resources to share with Natalia's Doctors and Therapists. Please check out their HOME Page of the website. They have a wealth of information. ~ ThereseAnn, mom to Natalia Marie (Living with Trisomy 13, 15 years old in 2015)

*Click here for Natalia Marie's SOFT story page

SOFT is the internet’s most complete source of medical and family resources for trisomy 18 & 13.

VISIT the SOFT WEBSITE for an extensive  library of Medical Publications, including research, care guidance and quarterly newsletters.  

“The Carebook:” The nationally recognized book about caring for children with trisomy 18 and 13 – a free download!

What is Trisomy 18? or 13? or Related Disorders?

Trisomy refers to having three copies of a chromosome in a cell, rather than the usual two…read What is Trisomy

♥ Trisomy 18 occurs in about 1 in 7,000 live births and is the result of an extra copy of the 18th chromosome being present in cells.…read Trisomy 18 Facts.

♥ Trisomy 13 occurs in about 1 in 10,000 live births and is the result of an extra copy of the 13th chromosome being present in cells.…read Trisomy 13 Facts.

♥ What are Related Disorders? Mosaicism, partials, translocations and other chromosomal disorders are variations of a full trisomy…

If your Trisomy Baby Could talk... making the right decisions for your Trisomy Journey

To all the Trisomy Parents wondering what decisions to make after their child's diagnosis...
Prenatal or Postnatal (afterbirth diagnosis) 
Carrying to Term, Perinatal Hospice, Palliative Support, 
Medical Treatment, Surgical Intervention and Supportive Living Care.
If your Baby could talk... this is what your baby would say...   
View on youtube - https://www.youtube.com/watch?v=kXtllFhGOsI

View on youtube - https://www.youtube.com/watch?v=kXtllFhGOsI

NEW FAMILY FREE INFORMATION PACKET at www.TRISOMY.org
LIKE and FOLLOW Trisomy.org's Facebook Page and Group

International Trisomy Alliance http://www.internationaltrisomyalliance.com
ITA publications you can download and print FREE

National NEWS - Study reports Trisomy kids enrich their families lives

Parents and Many Pediatricians Disagree over treatment of babies born with Trisomy 13 or Trisomy18

By Dave Andrusko

Yesterday we ran a story by Alex Schadenberg which reinforced something we know to be true but is not widely understood: That most parents of children with Trisomy 13 or Trisomy18 conditions (in this case Canadian parents) consider their child to be happy and found that their lives were enriched by the child. He drew that conclusion based on the results of a study published in the current edition of the Journal “Pediatrics.”

I’m going to pick up here on the disquieting truth that these affirming observations are very different than that attitude of many pediatricians towards these conditions.  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

Medical Professional Literature, Articles and Resources

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