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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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Television

CNN’s Anderson Cooper - 360° Interview: ‘Why I chose not to have a late-term abortion’  Editor’s Note: Dr. George Tiller, whose Kansas women’s clinic frequently took center stage in the U.S. debate over abortion, was shot and killed while serving as an usher at his Wichita church Sunday morning. His murder has ignited debate and curiosity over late-term abortions and why they’re performed. On Monday, we spoke to Lynda Waddington, who had a late-term abortion when she discovered her baby would not survive due to a genetic defect. That prompted Diane Elder to get in touch with us to share her story. Read this 360° interview to learn about her experience.
Komo News, Reported by Kaylin Krashesky.News article with video "Hailey's Hope" (Carrying to term family story)  You can also read more about Hailey off her  prenatal album page
TV news feature about Sick Kids Hospital – Toronto, Canada Human Rights Hearing with
the Farlows - parents to Annie
or  click http://toronto.ctv.ca/ and Search for "parents aim complaint at Sickkids"
Now I Lay Me Down To Sleep (NILMDTS) invites you to "EXTREME MAKEOVER HOME EDITION" on Sunday, March 1 at 8:00pm.
"Amber Augustin, a volunteer photographer for Now I Lay Me Down To Sleep (NILMDTS), a nonprofit organization that offers heirloom photography to parents who lose babies in early infancy, and her family of five will be the proud recipients of a new home."
more details and RSVP
HEALING THE HEARTBREAK THE POWER OF BABY PHOTOS Now I Lay Me Down to Sleep - NBC's Today Show - 2008-03-05

Videos

Introducing Trisomy Awareness Advocates
Michael & Janelle Hennessey
of Ironmanforkids.com
To view YOU TUBE VIDEO click here

SPECIAL NEEDS PLANNING - An Interactive Online Seminar presented by EPLiveOnline and Merrill Lynch recorded Feb 25, 2009
Now I Lay Me Down to Sleep (NILMDTS) - Trisomy This video was produced for parents and families who are researching Trisomy.
MISS Foundations Featured Video - Founder and CEO, Dr. Joanne Cacciatore, talks about this amazing organization.
Tangible Memories MSNBC video for babies who are likely not to survive birth Healing the Heartbreak - The Power of Baby Photos
BE A VOICE FOR LIFE - An outreach of Focus on the Family
Another Voice for Life: Todd and Angie Smith
An ultrasound in January 2008 revealed that little Audrey Caroline had physical problems that would make her life a very brief one. Her mom, Angie says, "Audrey, you kicked inside of me as they told us that we should let you go. That decision was not for us to make. For the next 3 months, you went to Disney World, to the zoo, and to listen to daddy sing. On the day you were born, your sisters held you and kissed your sweet, clean skin. We sang over you as God welcomed you into heaven — we only wanted to love you the way you deserved to be loved."
WATCH this short slideshow created in honor of Audrey Caroline's life.
What Sorts of People - Living with trisomy 13: Sterotype Propagation and the Illision of Choice
January 25, 2009
IDEAS FOR CHANGE IN AMERICA 
“I will open the doors of government and ask you to be involved in your won democracy again.” - President Barack Obama - Fully Fund Medicaid Waivers for the Developmentally Disabled
Born Alive Truth Announcing the World Premiere of 22 weeks. View the trailer – based on a true story
Celebrating the LIFE of Aaron Barg
A Tribute to Bubba September 13, 1990 - January 23rd 2009
In the Spirit – Trisomy the FLY
By Steven Barg
Had to share this cute YouTube video of Callum Tarling  He’s delightful, and so happy. So often we hear those are only photos shared on this site, and you can’t see how the kids are doing. Well here is a video showing a very happy child with Patau Syndrome More on Callum Tarling visit his Album page.

Newspaper/Web News/Blogs

Landmark study sheds new light on human chromosomal birth defects
EurekAlert (press release) - Washington,DC,USA
... that include Down, Edwards, Patau, Turner, Klinefelter's and XYY syndromes. ... and can cause human chromosomal birth defects such as Down syndrome, ...
Dallas Morning News - Dallas, TX, USA
September 6, 2009

By LEE HANCOCK / The Dallas Morning News
Carrollton couple celebrates son's birth, and begins waiting for the end
September 4, 2009

Editorial: Better because of Thomas
a Carrollton couple who learned during a prenatal screening that their first child, a son they had named Thomas, suffered from Trisomy 13.
Jonathan’s Celebration of Life - A story of Faith, Hope and Love (Video on the Blogspot) - Friend’s and Family came together with an overwhelming amount of gifts and monetary donations that were brought for children in need, benefiting local children and ministry centers. Jonathann’s album page on this site.
Pre-natally and Post-natally Diagnosed Conditions Act Signed into Law by the President
Victory in Washington - The Trisomy 18 Foundation applauds the final passage of the Pre-natally and Post-natally Diagnosed Conditions Awareness Act (S. 1810). The Act, signed into law by President Bush on October 8th, ensures that families who receive prenatal diagnoses of Trisomy 18, Trisomy 13, Down Syndrome or other genetic conditions will have access to up-to-date information about the nature of the condition and connection with support services and networks that could offer assistance.
BROWNBACK, KENNEDY INTRODUCE PRENATALLY DIAGNOSED CONDITIONS AWARENESS ACT

U.S. Department of Health and Human Services HRSA Health Resources and Services Administration
National Post , Tuesday, June 23, 2009 Parents in sick kids lawsuit offer deal by Joseph Brean
Visit Kim's "Bargain Kids Clothing Boutique" online  “I started this online webstore in hopes that I would be able to continue to stay at home with my daughter Kaitlyn.”
Taylor Passmore’s Legacy page at Legacy.com Memoria Websites Taylor James "Tayman" Passmore
May 29, 1993 - March 30, 2009
Bellevue, Washington - Taylor
California Department of Public Health – California Birth Defects Monitoring Program - Medical Care Treatment - Any course of treatment will be decided on an individual basis. Routine follow up care for a child with Trisomy 13 includes cardiac evaluations, eye evaluations, MRI of the head, abdominal ultrasound, hearing tests, referral for infant pre-school/early intervention programs, scoliosis checks through childhood and getting routine immunizations2. Family support and genetic counseling are recommended.
The California Department of Public Health highlights the photo of “Tucker Reite” on their Trisomy 13 information page. Tucker lived for 2 years with trisomy 13. After having lost Tucker, Jim and Lori Reite opened their hearts again when they heard through this web site message boards that a little boy was in need of adoption. Meet “ “JoeyReite
Patricia Farmer honored on May 8th at the Stephens Center.  Farmer co-authored "Trisomy 13: A guide for Families"  She also had a son, Joey Watson, with Trisomy 13. The “JOEY WATSON Fund” has been set up through SOFT with the proceeds to help families with travel expenses to the Annual SOFT Conventions. Please note the “Joey Watson Fund
The Washington Times Sunday, May 10, 2009 ~Happy Mother’s Day~
Choosing not to abort babies with disabilities By Julia Duin
April 15, 2009 - thestar.com Parents want Sick Kids taken to rights tribunal
Saturday, May 2nd - Another Ironman For Kids Event - Wild Flower Kids Run - at the lovely San Antonio Botanical Gardens.
April 3, 2009 — Spirit of our Time
What Sorts of People?
Chromosomal microarray analysis, newgenics, and Annie Farlow
 
Barbara Farlow (Annie’s mother) has become an International spokesperson for Trisomy Awareness, you can read more about her accomplishments off her LWT13 album page for Annie as well as the link to her website.
ProWoman ProLife Blog- Canada without abortion. By choice. Call it like it is Within the article: “I think this new test sounds like eugenics to me:” Responses from Barbara Farlow, A Trisomy Awareness spokesperson and also Annie's mom, “Medical texts and journals, always choose the most horrible picture of the same genetic condition, in which the child is severely afflicted like this...”
March 31, 2009 Canadian Medical Association - Prenatal DNA test raises both hopes and worries  “...question whether scientists should even be in the business of cleaning up the gene pool and have evoked the dreaded "E" word: eugenics.”
“I feel that the genetic testing ultimately determined her fate," says Farlow, (mom to Annie) who lives in Mississauga, Ontario. "She was treated as a syndrome. She wasn't treated as a child.”
Canada -Mar 21, 2009 THE HAMILTON SPECTATOR Laid-off mom has politicians teary-eyed JACKSON HAYES
TRIS (Tracking Rare Incidence Syndromes) In the News
ROME, FEB. 1, 2009
SCREENING LIFE Tests Lead to Elimination of the “Unfit” By Father John Flynn, LC
Miles to Go for Life & the SPIN TO JOY event, FEB. 28, 2009
By Joseph Pronechen
Although this is an article dated August 2008, its a great time to share Michael Hennessey and his amazing love for our Trisomy kids. His efforts to help raise Trisomy Awareness have not gone unnoticed. To read more about Michael and all he is doing for special kids go to his website, Ironman for Kids  and be sure to view his blog  and read about the upcoming SPIN TO JOY
Feb. 27 2009
Rare cancer can't keep child from being active Mickayla Pruett was diagnosed with bilateral retinoblastoma when she was 18 months old. By Iuliana Petre Killeen Daily Herald

DECEMBER 21, 2008
323 days - In the face of a grim prognosis: love and compassion, grace and strength BY ROB WARNER

December 19, 2008
Mercy Medical pediatric home care program - Payton’s story
August 20, 2008
How Annie’s short life inspired her mother’s mission TheStar.com by Helen Henderson “Some families may feel comfortable knowing they will be giving birth to a child with disabilities; others may not, she says. Either way, their wishes should be respected through a process that is transparent and accountable.” More on Annie
November 23, 2008 From The Sunday Times
It was all too easy to lose my son
Victoria Lambert terminated her pregnancy because the baby was disabled, but is now troubled by how readily society accepts such action.
“What I do know, and often think, is that if my son had been born alive and perhaps with two years to live, were those not two years of my life that I could have spared to nurse him? Would it really have been such a big deal? With hindsight, I think I could have offered that at the very least to a child I had wanted so much."
Flashpoint! A Woman’s Right To Choose
by Gary Graham
... No. I’m going to say it. I’m going to say what millions know in the front of their brains, and many, many more millions know in the depths of their hearts…but won’t allow themselves to think it, much less feel it. And believe me, I know I’ll be hated for saying it...

Articles - Blogs - Reports

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...” 
Exclusive: Twenty Years of Eugenic Abortion at Ontario Catholic Hospital Special Report presents hospital policy document approving the procedure By John-Henry Westen
Infant death: Grief and the path to loving remembrance  Infant death causes heart-wrenching grief. A Mayo Clinic psychologist offers parents insight and hope.
By Shawna Ehlers, Ph.D.
Trisomy Awareness - Trisomy 21 is Down Syndrome.  I came across this well put together blog which share the daily new events as they pertain to the Trisomy community as a whole. Many of you are familiar with the poem Welcome to Holland Hope you enjoy this blog written in London, Welcome to Illinois
Australia: No Residency for Boy With Down Syndrome  Australia denies residency to German whose son has Down syndrome; health minister urges review By TANALEE SMITH Associated Press Writer SYDNEY, Australia October 31, 2008 (AP)
Spanish Speaking (Espanol) Trisomy 13 Support Group There is a a support group, and if anyone would like to join for emotional support or to learn about the experiences of parents whose children are living with trisomy 13.

Tenemos un grupo de apoyo en Español. En este grupo los miembros dan y reciben apoyo emocional y aprenden sobre las experiencias de padres con hijos que viven con la trisomía 13.
Dominic Lawson: Shame on the doctors prejudiced against Down Syndrome (Trisomy 21)  The medical profession has a visceral bias in favour of eugenic termination Tuesday, 25 November 2008

In Medical News

Exclusive: Twenty Years of Eugenic Abortion at Ontario Catholic Hospital Special Report presents hospital policy document approving the procedure
By John-Henry Westen

"My daughter Annie was born with Trisomy 13 and she lived for 80 days. She smiled for the first time 3 days before she died. We would not have had that time if we had chosen early induction. I have come to know many families who had a baby who lived only a short period of time and every minute was unforgettable to them. Nobody has regrets. Families need a lot of support to carry to term and love their children until their natural death. The offer of early induction denies families this precious time and that is a tragedy." In an "early induction" the mother is induced into labor at a point so early in the pregnancy that even a healthy child would be unable to live outside the womb without specialized intensive care; under such circumstances, a severely disabled child will likely not live more than minutes.
National Institutes of Health
Office of Rare Diseases Research (ORDR)
Genetic and Rare Diseases Information Center (GARD)

Treatment of children with trisomy 13 is planned on a case-by-case basis. The type of treatment given depends on the patient's individual condition.
New Prenatal Blood Tests To Diagnose Down Syndrome Could Replace Existing Invasive Procedures
Down’s signs ’seen in stem cells’
They discovered that the presence of the extra chromosome 21, known as trisomy 21, disturbs a key regulating gene called REST, which then disturbs the cascade of other genes that control normal development at the embryonic stem cell

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
 

Please visit our "Sister" Trisomy 13 - Patau Syndrome sites

Click here to visit a translation of a German Trisomy 13 photos site

Prenatal Partners Trisomy 13 Stories
 


 

If you are the parent of a child with Trisomy please visit Tracking Rare Incidence Syndromes (TRIS) and find out how adding your information to their database can help increase Trisomy awareness. Click here for more info...

 

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

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
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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 (Patau Syndrome) - 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.
 
 

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