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Ironman for Kids - The Living with Trisomy 13 Community thanks Michael Hennessey for helping to raise awareness for Trisomy 13 and other related disorders. See Video & Details>

News & Updates

NEWS

6-26-08 Can You Race several Ironmans in a Year? LISTEN NOW
Michael Hennessey is on a mission to race several Ironmans this year in an effort to raise awareness about a chromosomal disorder in babies called Trisomy. Today on Endurance Planet we hear about the amazing effort. ...
Main site click here EndurancePlanet.com Interviews      More>

Julie, mom to Wyatt has a beautiful caringbridge site where she journals the daily happenings with little sister Jolene (born 11/28/07) diagnosed with bilateral retinoblastoma, a rare eye cancer. Julie shares how she “Saw a Miracle at St. Jude...” 

PATIENT CENTERED CARE - Barbara Farlow, mom to Annie spoke at the First Annual Sue MacRae Lecture On Ethics and Patient-Centred Care on June 11th, 2008 CLICK TO VIEW NOW
Prenatal biochemical screening only detects half of chromosomal abnormalities
EUREKALERT Jun 1 2008, 6:28 PM EST
European Society of Human Genetics
Women should be better informed before deciding to undertake it. Barcelona, Spain
Foetal screening 'misses defects'
BBC News - UK
Pregnant women are offered a number of tests
Tests used in pregnancy only pick up half of potential chromosomal abnormalities, Italian research warns.
Photographer Documents Terminally Ill Infants
(CBS 5) Reporting Thuy Vu
Dangers of Prenatal Testing April 13, 2008
Reporter: Jane Hansen - An ultrasound screening test at 12 weeks is now considered a routine part of pregnancy, but an eminent British Radiologist claims the test, designed to pick up chromosomal abnormalities like Down syndrome, is highly inaccurate. Also available on Trisomy Oz Breaking News Page
SOFT International Conference

July 23 -July 27
Denver, Colorado
Death Talk -  a FREE podcast available online or through iTunes, hosted by Dr. Joanne Cacciatore and Katie Dean on the Global Grief Network. Exploring biopsychosocial effects of tragedy and experience the wisdom inherent in the mourning process. Topics such as cultural responses to loss, ritualization, empiric research, and the neuroscience of loss.

Minutes to Memories - Article about Aimee Weathers and the gift of  nine minutes with her daughter Sophie Ann

Corbin’s mom Robin helps bring attention to Trisomy 13 as we launch March as Trisomy Awareness Month. News Article

New support Organization for Mom’s facing a terminal diagnosis Strings of Pearls email: stringsofpearls@gmail.com 

MISS Foundations Featured Video - Founder and CEO, Dr. Joanne Cacciatore, talks about this amazing organization.

Not Compatible with Life, a diary of keeping Daniel
By Kylie Sheffield
Kylie (mom to Daniel) would love to share her book with you.

Celebrating Trisomy 13 Awareness Day
A Mother's Grief Helps Others News Article
Tangible Memories MSNBC video for babies who are likely not to survive birth Healing the Heartbreak - The Power of Baby Photos

Books available from SOFT

After the birth of Anna, Mom, Sarah, was inspired to begin a business and ministry...

B is for Baby "Burp-Cloths, Bibs, Blankets and More" hand-made baby and toddler items made with a mother's love.  On behalf of each order received, an item (i.e. burp-cloth, bib or blanket) will be donated to a local hospital; to be distributed to babies with special health issues, babies born premature or families in need.
Orleans man defies predictions, lived 34 years with rare illness
Greenville Daily News, MI - Jan 11, 2008
Parents hope for miracle for their little angel - Monitor, TX - Dec 15, 2007
Trisomy Voices   A collection of AUDIO interviews with families touched by trisomy 18, trisomy 13, and other rare trisomy disorders.
Please join us in praying at 3:00 pm (central time) for our beautiful children affected by trisomy 13

Don't Miss!!

Prenatal Diagnosis Information Package - Compiled by Kylie Sheffield (mum of Daniel, full Trisomy 13) in consultation with families on this web site

TRISOMY AWARENESS Ideas

Trisomy 13 Awareness Bracelets - designed and sold by Daena Seland
This beautiful and one of a kind bracelet, made of sterling silver, Swarovski crystals and pearls was designed with the hope of increasing the awareness of Trisomy-13 and offer families a token of strength, remembrance and most of all love.
When making up personal business cards, remember to add your URL addy page to your child, hence spreading more "trisomy awareness." You never know who may remember this site when approached by someone diagnosed with a trisomy condition. (or Click here to download printable LivingWithTrisomy13.org "awareness cards.")

Create a free video montage at OneTrueMedia for your child  - add as many photos or video clips as you like and your favorite song.  Celebrate your child's life and create a personal message to all who might view the presentation. (Be sure to add a link to their web site or to their LivingWithTrisomy13.org page.) Then send out a link to your child's page or montage with your holiday greeting!

TRISOMY 13 – Patau Syndrome
IN THE NEWS

FREE ~New Family Package from SOFT
 
Healthcare professionals available to message board members!
"Ask the Pediatrician"
"Ask the Geneticist"
"Ask the OB-GYN"
"Ask the Dentist"
“Ask the RN” ~ Labor & Delivery and NICU experienced.

Google New Search – Trisomy 13
 
Google News Search – Patau Syndrome

DOGPILE – Trisomy 13 News Now Searching: Yahoo! Search, Topix, FOXNews, ABCNEWS, And More

DOGPILE – Patau Syndrome News Now Searching: Yahoo! Search, Topix, FOXNews, ABCNEWS, And More

Site Updates:

July 7, 2008

July 5, 2008

  • See video of Ironman Michael Hennessey's journey for trisomy awareness
  • Video presentation added to Logan Hunter Popejoy's memory album

July 3, 2008

  • Update and photo added to two year old Stephen Fox's album

July 1, 2008

June 16, 2008

June 14, 2008

June 11, 2008

June 9, 2008

June 7, 2008

June 4, 2008

  • Update added for Zoey who is now in heaven, resting in the arms of Jesus.

May 31, 2008

May 28, 2008

May 25, 2008

May 16, 2008

May 15, 2008

May 14, 2008

May 12, 2008

May 10, 2008

April 27, 2008

April 24, 2008

April 23, 2008

April 21, 2008

April 20, 2008

April 17, 2008

April 16, 2008

April 15, 2008

April 14, 2008

April 12, 2008

April 11, 2008

April 8, 2008

April 6, 2008

April 5, 2008

  • 2008 Living with Trisomy 13 SURVEY - Deadline is quickly approaching.  Investigating the common T13 experience and helping to update the current literature written on the children diagnosed with Patau Syndrome. If you’d like to participate contact us ASAP. info@livingwithtrisomy13.org

April 4, 2008

April 3, 2008

March 23, 2008

March 16, 2008

March 14, 2008

March 13, 2008

March 9, 2008

March 6, 2008

  • 19 month old Samuel Mabeus went home to the arms of our Lord on Friday, February 29th

February 26, 2008

February 24, 2008

February 20, 2008

Previous Updates >
 

 


Have a child living with Trisomy 13 syndrome - a Patau syndrome survivor?
We would love to add your child to our Album.
Click here to send us their information.

 

 
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Click here to download printable LivingWithTrisomy13.org "awareness cards."

Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA  92649

info@LivingWithTrisomy13.org

 

 

Text and graphics © LivingWithTrisomy13.org 2005-2007 All information found on this site was submitted to us directly by the families and used on this site with their permission.
Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 

Looking for ALL families who’ve had a trisomy child of any number. Whether you terminated, miscarriage, had a stillbirth, live birth - living or deceased. Including adoptive and Foster parents. Please fill out the TRIS survey  to help update the medical literature and to improve the quality and availability of medical care. Tracking Rare Incidence Syndromes (TRIS)  Click here to add your information

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