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

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What is Trisomy 18?
What is Trisomy 13?
What are the Related Disorders?
Trisomy 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22



So much information... Click here to go DIRECTLY to the Trisomy.org website.
Slideshow, Videos, Family Stories, Professional Articles and Literature, E-care book,
Facebook Page and Group support communities where families gather to share their experiences.

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

♥ For Expectant Parents

♥ For those Parenting a Child

♥ For those Remembering a Child

♥ SOFT Welcomes Medical Professionals

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…

Trisomy 13 and 18 Families Continue to SHARE their Experiences.

I came across a wonderful article from Susan Hatfield and wanted to share it as her words echo many of my own thoughts on our own Trisomy 13 Journey with Natalia. 

Families in 2012 have a wealth of trisomy medical health support options when carrying to term a trisomy 13 child. Or, if given the genetic profile at birth as we were with Natalia, there are many living trisomy support groups to help these families.

Feeding Tubes, NICU, One-on-One Care: Susan Hatfield Talks About Living with her Trisomy 18 Baby

There are many great doctors who have cared for Zane. There are many not-so-good ones as well. While Trisomy 18 is usually fatal, it is not always. And even with the shortened life expectancy of children living with the diagnosis, there should be a level of compassion on the part of the medical world when handling families such as ours.

We appreciated the neonatologist’s honesty about the statistics associated with Trisomy 18. But Zane is a living example of how the medical community is not the end-all of knowledge. They do not have crystal balls or prophetic gifts. As such, many of them should not pretend that they do. We had little or no hope for our son. With the doom and gloom presented to us, we lived in a place riddled with anxiety and hopelessness.

This is not how it should be with an extra 18th chromosome. Everyone, regardless of genetic makeup, ability, or disability, should be treated with kindness and compassion, especially when their lives are so limited. Read More

SOFT has been supporting Trisomy Families & Professionals 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

Looking for Trisomy Support? Be sure to also check out  FACEBOOK Pages and Groups.