Trisomy 13 Life with Natalia ~ Transformed by Love: palliative care

TRISOMY 13 LIFE

facebook group

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PRENATAL, PRE-BORN, LIVING and GRIEF Support.

Many families gathering together again from the

Original Living with Trisomy 13 .org Community.

Currently the livingwithtrisomy13.org is rolling to SOFT at Trisomy.org for quick and immediate support literature.

TRISOMY LIFE trisomy 13 Patau syndrome trisomy 18 Edwards syndrome and images

“Our children are not a diagnosis”: the family experience of trisomy 13 and 18

One of the most well-published academic neonatologists posted an article about our trisomy 13/18 children. He offers great advice to his colleagues.
Click here for full Neonatal Research Blog article

Many wonderful comments too!!!
50 Plus at this posting!
Click here

33 Years Strong SOFT Organization for Trisomy 18, 13 and Related Disorders has been the ROCK of Trisomy Families with yearly conventions, medical literature, books and quarterly newsletters, be sure to view their publications off the website.
trisomy.org

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

Collage created by Barb Farlow International Patient Safety Advocate
(Text within image)
OUR COMMUNITY HAS A VOICE
Janvier A, Farlow B, Wilfond B. The Experience of Families With Children With Trisomy 13 and 18 in Social Networks.
Pediatrics July 23 10.1542/peds.2012-0151
With heartfelt gratitude to Dr. Annie Janvier and Dr. Ben Wilfond

Natalia - Full Trisomy 13 http://www.trisomyfavoritethings.blogspot.com

Come Pray the Rosary Individually or Worldwide

Pray the Rosary Hebrews 12:1-3 New International Version (NIV) 12 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. 3 Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

IRONMAN FOR KIDS ~ MAKING A DIFFERENCE IN THE LIVES OF TRISOMY CHILDREN

Summer 2012 Featuring IRONMAN FOR KIDS SPIN TO JOY A program of Ironman for Kids that raises funds to purchase special needs bikes/equipment for some amazing kids. Getting children and families out together to feel the wind on their face, energy in their legs, and joy in their hearts!

*** WE love our tandem bike gifted to us by the Ironman for kids organization.

(ThereseAnn, Mom to Natalia full t13 11yrs)

TRI-BE ~Be Inspired to help a child and family

If you feel called to help us in our mission we are now accepting online donations and thank you in advance.

Trisomy 13 Life with Natalia ~ Transformed by Love

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Tuesday, May 13, 2014

Trisomy Documentary Shares the Experience Newly Diagnosed Families Face

Like Labeled Documentary on Facebook! (click here)

Trisomy Family and Professional Support www.trisomy.org

Monday, February 24, 2014

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

Friday, February 14, 2014

Valentine’s Video of Our Amazing Trisomy Children on then SOFT Trisomy.org website

Wednesday, January 1, 2014

Welcoming 2014 Global - International Trisomy Support Groups for Families and Professionals

Monday, July 23, 2012

Neonatal Research Blog on the family experience of trisomy 13 and 18