Trisomy 13 - Patau Syndrome NEWS

Poor Prenatal Diagnoses & Therapeutic Intervention

2012-01-25T15:31:00.001-08:00

Council on Poor Prenatal Diagnoses & Therapeutic Intervention

Founding Partners: Medical Students for Life, Family Research Council, LeJeune Foundation, USA & Keep Infants with Down Syndrome

First Annual Conference on Medical Advances in Prenatal Diagnoses

The Conference will bring together professionals from many different specialty areas, including genetic researchers, ob/gyn physicians, developmental pediatricians, hospital nursing staff, medical genetic counselors and medical students. Other invited participants and guests include peer ministry providers, social service support professionals, advocates for persons with disabilities and public policy specialists.

The goals of the Conference are:

affirm the life and dignity of all persons, especially those diagnosed prenatally with a disability or lethal condition
review how information about prenatal diagnoses of disability or lethal condition is currently delivered
consider how this information might be delivered more comprehensively
consider the impact of a new blood test for Down syndrome in obstetric care
explain the work of the Council and its year-long engagement on prenatal diagnosis issues
review best practices for postnatal care of infants with disabilities in perinatal hospice and in hospital, home and medical daycare settings

From SOFT- What Should We Do Now? Necessary Information After a Diagnosis of Trisomy 18-Edwards Syndrome or Trisomy 13- Patau Syndrome

2011-10-31T10:24:00.000-07:00

View NEW & UPDATED Trisomy 13 Stories

http://www.livingwithtrisomy13.org/blog.php

What Should We Do Now? Necessary Information After a Diagnosis of Trisomy 18 or Trisomy 13.

Pamela J. Healey, Ph.D

The Need for Information at Diagnosis

For parents newly facing such a diagnosis there is at least a glimmer of hope that their newborn will survive. This reality should be acknowledged by professionals treating their child. There are survivors. Despite the odds, some children with trisomy 18 and trisomy 13 do survive, develop, and become important members of their families. Trisomy 18 and trisomy 13 are not, as has been declared, “incompatible with life”, nor are the syndromes necessarily “lethal conditions”. Survival depends on the particular constellation of malformations resulting from the extra genetic material, the rest of the child’s genetic code, the medical care and interventions an infant, then child, receives in the hospital and at home, exposure and response to viruses, and probably, an element of chance. It is not understood why some children survive. Some with early risk factors and multiple medical crises during childhood, survive into adulthood. READ MORE
Families & Professionals working with Trisomy Families
Searching for the most current and updated information on TRISOMY?
Go to: SOFT Support Organization for Trisomy 18, 13 and Related Disorders
***Hundreds of "Trisomy13Archive.com" Images***
Archived Living with Trisomy 13 website sharing 300 family stories from 2005-2010
To view this blog outside the LWT13 archive site, copy and pasted this URL in a 'new window'
http://trisomy13-patausyndrome.blogspot.com
*SHARE OR UPDATE YOUR TRISOMY 13 STORY http://www.livingwithtrisomy13.org/entry.php/399-SHARE-Your-Story-Suggested-Info-to-Provide-with-New-Stories-and-Updateshttp://www.livingwithtrisomy13.org/blog.php

SOFT New Family and Professional Support - Sharing your Trisomy 13 Patau Syndrome Story

2011-10-10T10:00:00.000-07:00

Professionals, Doctors, Pediatric Specialists, Nurses, Therapists, Teachers working with Trisomy Families. SOFT New Family Information Package In 2011 SOFT Celebrates 25 years supporting Trisomy 18, 13 and Related Disorders SOFT Global Support

Hospital, Medicine and Government sites write about Patau syndrome. Its the least common and one of the most severe of the viable autosomal trisomies. Having 3 copies of the 13 chromosome. In Patau Syndrome - Trisomy 13 literature you'll read about Karyotype, meiosis, ultrasound markers, life expectancy, causes, risk factors, prognosis, and treatment. You’ll learn about Mosiac, Full, Partial and Translocation Variations.
This blog shares many resource links to current 2011 Trisomy Support for Families and Professionals working and caring for these unique babies, children, teens and adults.

Over 300 Families have shared their stories with pictures and images within slideshow presentations.
Archive Living with Trisomy 13 Patau Syndrome Website (2005-2010)
2011 - Trisomy 13 - Patau Syndrome Support Website *Share Your Story

Changing the Label - Trisomy Support for Families, Doctors & Other Professionals

2011-07-09T09:50:00.000-07:00

NEW
Trisomy Advocacy Group
Changing the Label
of 'incompatible with life' with a diagnosis of Trisomy 13, Trisomy 18, and all other related trisomies. This video is dedicated to all trisomy families sharing their miracles and advocating to change the label.

What is Patau Syndrome Trisomy 13? What is the life expectancy?

2011-07-07T09:00:00.000-07:00

July 2011

What is the life expectancy? Each baby charts his/her own course. Is it always fatal?... NOT always, there are many survivors living today with trisomy 18, 13 and other related syndromes (see SOFT Celebrating 25yrs supporting families) Each child presents the expected malformations differently, some can be managed, while some are more serious and decisions will need to be made with the family and professionals. Hundreds, of families share their stories on online support resources. These families have and continue to create change in how these kids are being treated. Click Here to VIEW "Changing the Label" Video on YouTube (Advocating for Trisomy 13, 18, and other related Trisomies)

In March 2011 (Trisomy Awareness Month) three local Southern California Families met at Miller Children's Hospital in Long Beach, California. Sharing with the Supportive / Palliative Care team some of the local survivors LIVING with Full Trisomy 13 - Patau Syndrome. They have started a yearly Palliative Care Pursuit Walk to Support the Pediatric Palliative Care Program at Millers Children's Hospital Long Beach.

All Living with Full Trisomy 13 - Patau Syndrome Natalia, Stephen and Sofia
Local Hospitals that help care for our Trisomy kids. :)
Miller Children's Hospital (Long Beach and Surrounding areas.)

CHOC Children's Hospital

(Newport Beach, Irvine, and Orange County Surrounding areas)
Children's Hospital of Los Angeles
Los Angeles Orthopedic Hospital

Before sharing this PDF link below, I want to state, Memorial Care Center for Women and Long Beach Memorial Medical Center in 2000 was wonderful when Natalia was born. Natalia was appropriately wisked off to NICU and she was cared for as you would any typical child. That I am grateful for. I'm thankful we did not deal with the Prenatal pressure that some receive when having a Prenatal diagnosis of Trisomy 13.

As some of you know, I've spent years online helping families share their trisomy 13 stories. While I'm not presently facilitating the LWT13 site, I am still passionate about making sure there is not MISinformation being promoted. Thousands of women have shared on the many Trisomy Advocacy Resources, to help others with this unique life journey. So I was very surprised to come across this link last week.
In 2010 there was conference sponsored by Memorial Care Center for Women that states in their literature that "Trisomy 13 is fatal" This unilateral statement is Outdated and MIS-information. There are over 100 Survivors LIVING with Trisomy 13 at this posting, and many who had lived several years before their death. See SOFT USA and the Archive LivingwithTrisomy13site and current trisomy 13 support for more information.

This is what caught my eye.
Click for pdf.
Current Topics in Obstetrics
Sponsored by Memorial Care Center for Women and Long Beach Memorial Medical Center in conjuction with Memorial UCI Center for Health Education
Course Description

It was found that 1 .) Trisomy 13 is a fatal chromosomal

abnormality, of which 10% of affected fetuses are not readily

diagnosed by ultrasound; 2;) approximately 11% of pregnant

women suffer from major depression which requires treatment

and if left un treated there are risks of preterm delivery or

low birth weight; and 3.) the number of cesarean sections

(CS) remains high.

http://www.memorialcare.org/pdf/rkf-aspen-2010-brochure.pdf

I have been in touch with the Long Beach NICU and even emailed by local UCI Faculty and often have shared within hospital resources that there is local support. They know there are local trisomy survivors. :) From 2005 through present there has been an explosion of online Trisomy Support for families and Professionals for All Trisomy Variations including Trisomy 13 and Trisomy 18. Even the current .Gov Guidelines have been changed in 2007, to treat these kids on a base - by - base basis.

(At time of this initial posting) Treatment was: Medline Plus - Trisomy 13 Patau Syndrome Treatment of children with Trisomy 13 is planned on a case by case basis. The type of treatment given depends on the patients individual condition.

TREATMENT - Update date 8/4/2011

Medline Plus - Trisomy 13 - Patau Syndrome updated treatment

Treatment varies from child to child and depends on the specific symptoms.

By 2010 there were well over 300 Family Stories on the ARCHIVED Living with Trisomy 13 site and 100 of them were Prenatal Babies & Children, teens and a few adults living - surviving presently with Trisomy 13, Full, Partial and Mosaic Variations.

Any Google search will offer you many Resources for Trisomy 13, Trisomy 18 Support and share that this is no longer a correct statement. Images Videos, the many Facebook Resources
SOFT USA is the Global HUB for Trisomy Support
*SOFT has yearly family Conventions Photo Gallery

CURRENT . GOV GUIDELINES for Treatment
*National Institutes of Health - Office of Rare Diseases Research - Trisomy 13

What is the life expectancy? Each child charts his or her own course. When given appropriate medical care treating the individual and specific medical issues, some of these babies can do well. Treat the individual medical symptom not the syndrome. Working with families, helping them connect to others who've traveled this unique journey can give both Professionals and Families the Support needed for this Life Journey.
More Reading to Help Families and Professionals on this Journey.
When lethal language is used often lethal decisions are made

Lethal Language, Lethal Decisions (click here)

b y T R A C Y K . K O O G L E R , B E N J A M I N S . W I L F O N D , A N D

L A I N I E F R I E D M A N R O S S

Although many of the congenital syndromes that used to be lethal no longer are, they are still

routinely referred to as “lethal anomalies.” But the label is not only inaccurate, it is also dangerous: by

portraying as a medical determination what is in fact a judgment about the child’s quality of life, it wrests

from the parents a decision that only the parents can make...

Who would want a child like that? (click here)

I am told one doctor said to another about a woman wanting to bear and deliver a child with known severe disabilities: "But who would want a child like that anyway?".....

View more related Trisomy 13 Patau Syndrome Articles/Links from Medical Authorities

Living with Trisomy 13 - Patau Syndrome

2011-06-28T20:50:00.000-07:00

LIVING with TRISOMY 13 - PATAU SYNDROME TO THE NEW WEBSITE CLICK HERE

LIVING with TRISOMY 13 - PATAU SYNDROME TO THE NEW WEBSITE CLICK HERE

Trisomy Awareness

2011-06-16T14:17:00.000-07:00

https://www.youtube.com/watch?v=r6onEQ2cBQE

Trisomy Advocacy Group - Support For Families

Annie's Story: an Ethical Tragedy

2011-03-08T10:42:00.000-08:00

Barb Farlow has become a wonderful advocate for families. Bringing awareness to Public Health Care, Socialized Medicine, Rationed Healthcare working Internationally as well as online support for Trisomy Families (Trisomy13 - Trisomy 18) Patau and Edwards Syndrome. Thank you Barb.

Latest News and Current Events & BLOG posts related to Trisomy 13 (Patau Syndrome)

2010-12-09T15:58:00.000-08:00

What's NEW - Latest Update Blog/Stories
Latest News and Current Events

related toTrisomy 13 - Patau Syndrome

Click Here to view 'new web design' LWT13 Community.

http://www.trisomy-13.com

Living IT! The TV Series - Ironmanforkids.com featured

2010-12-07T09:43:00.000-08:00

Living IT! The TV Series - Featuring Ironmanforkids.com

Called "Living IT!"(Living Image Trinity)- this isn't just a program, it's a movement-- a capacity to touch millions, to transform culture. We need partners. We need you. Please read on.

THE PROGRAM: Each episode will be a moving, behind-the scenes, real-life portrait of a family that is uniquely and authentically living IT. As an example, for the pilot we may capture theMichael Hennessey Family story. Michael is a devout, Catholic husband and father of seven children who lives in San Antonio, Texas. They have committed their lives to promoting respect for human life, particularly trisomy (13 and 18) children and their families. Anchored in their Catholic faith, they have given hundreds of thousands of their own money; recently, Michael set the world record for the number of Ironman Triathlons competed in one year, all as part of their nonprofit, "Ironman for Kids" (see Life News)

Remembering Jedidiah - We're so Glad you Came...

2010-11-23T07:29:00.000-08:00

Avisitor from heaven, we're so glad you came....
Our Trisomy Journey - Remembering Jedidiah

For More Trisomy 13 - Patau Syndrome Support Resources
Living with Trisomy 13 (New website design forum, discussion groups)

Celebrating new LIFE -- another child reaches his loving mother's arms

2010-11-07T11:47:00.000-08:00

our trisomy journey- God's gift of jedidiah joseph

quick update

i just have a moment for a quick update on jedi.
he's doing amazingly and miraculously well. he sleeps well. when
awake he locks in on people when they talk to him and tracks your
voice. he is tolerating the feeding tube- feedings go smoothly, no
spitting up or aspirating.
he does have problems with apnea- when he just stops breathing- but
he's much improved since the first night- about 6-7 episodes then.
he's not on oxygen except for after an apnea episode- just to get him
pink again.
and he's just such a little bundle of love. his skin is velvety
smooth and his hair is old-man style- balding on top and kind of
kinky, dark brown, and long-ish around the back and sides.
he enjoys skin to skin, especially with daddy since he's got the
higher body temperature of the both of us. and i am working on
getting a milk supply up so that jedi can get some home made goodness
soon.the prayer request for today is thanksgiving. so many times we are
quick to ask for friends to pray for our needs, wants, desires- but
fail to ask them to join us in thanksgiving.
so please- let God hear your voice today- thank Him for His many many
blessings.

our trisomy journey- God's gift of jedidiah joseph

New site information - A quick "how to use" and site updates

2010-11-01T09:37:00.000-07:00

As you all know by now, the new site for livingwithtrisomy13.org has been
launched and most information in the old site has been transferred. The new
interface is more dynamic and the site itself is self sustaining allowing
everyone to interact in the forum section, post and update stories in the blog
section, create small community groups, albums, calendar, and other functions.
The interface may take a day or two to get used to, please be patient as we
clean up the final issues.

The site is highly moderated for now, all users must register in order to post
anything on the site. Although some sections are public, there are private
sections that are viewed to members only, while others can be private or
available to a specific group. I would urge everyone to go to the
livingwithtrisomy13.org and register. When you register please enter the
following text in the referrer section "Living with T13 member", that will help
me quickly verify that you are a member of the group and allow you on the site.

After you register, you will get a notification email indicating that you are
now an active member on the site and you are able to post. Go to the
livingwithtrisomy13.org and login (top right corner), also it is a good idea to
select the "remember me" check.

The forum section:

The forum will replace the yahoo group in the near future. I am in the process
of trying to migrate the content of the group into the new forum, as soon as
that is done, I will let you know.

The forums are divided into a public and private sections. Public sections will
be available to everyone on the site regardless whether they are logged in or
not. Private sections are for registered users only. The forums act the the same
way as the yahoo group. If you realize that a new forum is required, please let
me know and I will create that for you. In addition, if I see a topic that
reqires its own forum, I will create one.

The blog section

Blogs are mainly used for the stories. To add comments to the blog, scroll to
the bottom of the page and select "Reply" or "Post comment". As in the forum,
you can include pictures and videos in your reply. As an example, if you want
to update the story for your child, post a comment on your child's blog and add
pictures and videos as needed. I would recommend that everyone posts at least
one comment in their child's blog indicating any contact information they want
to have public. Please be careful in providing more information than required,
the blogs are public, and are available to everyone to see. If you are unable to
post to your blog, please let me know as some blogs are closed for posting and I
need to reopen them.

You can also start your own blog if needed, on any topic you might find useful.
Please be careful as the blogs are public again. If you would like to post
something to the group only, please post it in the private forums. In addition,
you can post comments on others blogs also.

After you login, navigate the site and post any questions in the help forum. The
help forum will quickly grow to cover all "How to use" topics. Also, please post
and comments, recommendations, and other requirements there, it is easier for me
to track the site if we follow that procedure.

Last, I would ask for some volunteers to monitor and moderate the site. You can
pick a specific section to moderate or choose a site-wide moderation. If you are
interested in moderating the site, send me a message on the site (to Admin ) and
will contact you and provide training.

I can always be reached at info@livingwithtrisomy13.org if you have any
questions or concerns.

Thank you
Hosni Adra
Malek's Dad
WebMaster

Annie's story is on the Canadian Patients for Patient Safety video!

2010-10-14T16:17:00.000-07:00

Annie's story is on the Canadian Patients for Patient Safety video!! The group decided to post it on youtube. http://www.livingwithtrisomy13.org/memoriesofAnnie.htm

Seasons of Trisomy Calendar 2011

2010-09-22T12:52:00.000-07:00

TO ORDER: see below (scroll down)

Seasons of Trisomy Facebook page.. share your photos here for next years Calendar (2012, 2013, 2014, 2015, 2016....)

Taking Orders NOW through Nov.15, for the 2011 "SEASONS OF TRISOMY" calender.
This calender sold for $69.00 at the SOFT conference auction. It is loaded with pictures of our trisomy children depicting their quality of life through out the seasons with special attention given to trisomy awareness month (March). The back page, "A look at our bright and shining stars" is a list of all the children featured in the calender with their birthday, thriving or DOD where applicable, and affected chromosome. You can now purchase your calender for $15.00 (S&H included in the price in U.S, aprox. $5-$6 more abroad) $1.00 of every calender sold will be donated to SOFT to help families that need assistance getting to the conference. You can make checks or money orders payable to:

Lori Reite
Georgetown, Ca. 95634

Please include IN your envelope a return address.
Calenders will be shipped out the first part of December
If you would like your child to be a part of the 2012 calender, I will be accepting pictures now through through June or July of 2011. Your child does NOT have to living to take part in the calender but the picture should depict a specific holiday or season. Preferred pictures would be just of your trisomy child (unless with Santa, being held in a swimming pool.ect) Be creative! December and October pics came easy but there is 10 other months to fill. So, use you imagination! You can send me as many pictures as you want as often as you want but please be sure to send your child's name and birth date and chromosome abnormality(optional) with each group of pics you send(makes my life easier!)Your child will be seen at least once on the calender and depending on how many responses I get, it could be more.

You can email pictures to: trisomymama

Seeking Trisomy Parents Whose Children Have Been Refused Medical Care in the US

2010-09-06T19:25:00.000-07:00

Seeking Trisomy Parents Whose Children Have Been Refused Medical Care in the US

by Rebekah Faith - Redefining "Incompatible With Life" on Monday, September 6, 2010 at 5:15pm

We have a mom in our community who may have a tremendous opportunity to do some major advocating for our children.

If you or a family you know has been refused medical care (services, operations, therapies, etc) because your child has trisomy 18, 13 or similar chromosome disorder, please send me the details of what was refused, why and where.

I will need:

your name,
your child's name/condition,
location,
a phone number where we can reach you,
permission to contact you/discuss your situation in the event that we can use this information for a published story.

Send your info to buddzoo@yahoo.com.

THANK YOU SO MUCH!

Susan Budd

http://www.facebook.com/rebekah.budd

Rebekah Faith Budd - 16 months with full trisomy 18 and redefining incompatible with life!

SPIN TO JOY - Special Trikes for Special Tykes!

2010-08-11T16:32:00.000-07:00

SPIN TO JOY EVENT... Riding for our KIDS
http://ironmanforkids.com/spintojoy/
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!
Spin to Joy has participants all over the country, spreading awareness, raising funds and holding their own special event. Check below to see what’s active today!!!

August 13, 2010–August 25,2010
Spin to Joy Event in California
She’s vibrant, she’s determined, and she’s a “MOM ON A MISSION”
Click here to learn more and donate:www.active.com/donate/spintojoy/momonamission

ThereseAnn(mom on a mission)pictured here with her daughter Natalia, started the support website livingwithtrisomy13 that highlights the beauty of trisomy13 children and that they do indeed live! Full of passion for her own daughter, now 10 yrs. old and all the children and families living with trisomy, ThereseAnn is trying to raise funds thru her own biking event so more children can experience the same joy on their own bike. Donations from her page will go to help all those you see pictured here. You may also give directly to a child if you wish by clicking the green link next to their name.

Sofia

Devon
www.active.com/donate/spintojoy/ourpaldevon

Rebecca
www.active.com/donate/spintojoy/rebeccacarter

If you would like to make a general donation towards a bike or equipment, please click here: www.active.com/donate/spintojoy

You can also mail a check to:
Ironman for Kids
833 N. Saint Mary’s St.
San Antonio, Texas 78205 (please specify if your donation is for a particular child)
+your donation is tax exempt in accord with our 501c3 status+

Please Vote daily - Create a web based Doctor Referral for Trisomy 13 and 18

2010-08-04T13:21:00.000-07:00

http://www.refresheverything.com/careforchildrenwithtrisomy13and18

Goals

Web-based expert national referral program for children with T13 & 18
Resources for parents to provide appropriate care & information
To provide funds for Trisomy 13 and 18 research

Project Sweet Peas

2010-07-24T08:41:00.000-07:00

Sweet Peas~♥~has some exciting news to share! GOOD MORNING AMERICA

will be doing a story on Tuesday morning, (JULY 27th)! This is the first
national media coverage for Project Sweet Peas since winning the Pepsi
Refresh Grant ♥ Love, Peace, & Nimkee Blessings to you all ♥

Project Sweet Peas

Melissa Dawn Roy ‎~Bennett-Chadlen was prenatally diagnosed with Trisomy 13. While he only lived 8 days here on Earth, his legacy shall live on through my desire to help other families in any way that I can. ♥ NIMKEE BLESSINGS ♥ is affiliated with *PROJECT SWEET PEAS*. More information can be found by following my attached link.

2010 SOFT CONFERENCE PHOTOS

2010-07-17T11:28:00.000-07:00

SOFT Support Organization for Trisomy
2010 Conference PHOTOS CLICK HERE

http://www.trisomy.org SOFT USA

SOFT USA site now offering Family Page SUPPORT - ADD YOUR STORY

2010-07-15T17:29:00.000-07:00

SOFT USA's Family Page
from all around the world... ADD YOURS

Sensory Severe Disabilities 2-2-10.wmv

2010-07-05T08:42:00.000-07:00

I've often used hand toys with our special needs child. The more you offer this stimulation the more they will do. In fact, early on, when Natalia would clench her fists, we would use that great opportunity to put a nosey rattle her her hand. She would shake it herself, and then she would open her hand to let it go. PERFECT.. Thats what we wanted, we wanted her to open her hands on her own. Eventually they learn they can open and close their fists, they have the power to case and effect...so enjoy all these little early mile stones and give yours kids lots of opportunity to play.

Another group of early favorite toys were the cause and effect of pushing buttons to hear music play. Very quickly Natalia learned that she had control of the music with just a gentle push of her hand. Some of her favorites were the basic Toy R Us preschool toys.. Leapfrog, playschool and such.
ThereseAnn, mom to Natalia

Cheap Blood Test Could Detect Disorders in Fetus - Pregnancy - FOXNews.com

2010-07-01T09:46:00.000-07:00

Cheap Blood Test Could Detect Disorders in Fetus - Pregnancy - FOXNews.com
While early testing will allow families to know the possible genetic complications before them, it will also set in motion in some cases, withholding of care. Sadly, some families are not given all their options when presented with a poor prenatal diagnosis of Trisomy 13 or other Trisomy genetic profiles.

Families who have experienced this life changing journey of being told their child has a trisomy disorder, all express the desire to know all aspects of treatment and or complications that would be expected. Families want to be fully informed. They want to know about the living survivors, and those who chose to only do palliative or hospice care.

Here are some Professional Resources that families who have experienced this trisomy 13 journey hope all Professionals read if they are caring for a trisomy 13 child.

Analysis of Fathers age and Trisomic Anomalies

2010-06-30T15:06:00.000-07:00

AGE OF THE FATHER AND THE HEALTH OF FUTURE GENERATIONS: There was ...

By concerned heart

Objectives To determine whether older paternal age increases the risk of fathering a pregnancy with Patau (trisomy 13), Edwards (trisomy 18), Klinefelter (XXY) or XYY syndrome. Design Case-control: cases with each of these syndromes ...

Help Support the TRISOMY SITES and VOTE Chase Community Giving

2010-06-29T20:02:00.000-07:00

VOTE for all the Trisomy Resources.. Thank you.

EASY QUICK LINKS here off TWITTERTrisomy13 News (PatauSyndrome) on Twitter

I just voted for Ironman For Kids to win $250k on Chase Community Giving! #chasegiving http://bit.ly/aKGmJ117 minutes ago via web
I just voted for Noah's Never Ending Rainbow Inc. to win $250k on Chase Community Giving! #chasegiving http://bit.ly/dnsjU318 minutes ago via web
I just voted for Hope For Trisomy 13 And 18 Inc to win $250k on Chase Community Giving! #chasegiving http://bit.ly/90DTz819 minutes ago via web
I just voted for Trisomy 5 P Foundation to win $250k on Chase Community Giving!#chasegiving http://bit.ly/9PiZXY
6 minutes ago via web

I just voted for Support Organization For Trisomy 18... to win $250k on Chase Community Giving! #chasegiving http://bit.ly/9v8mrk
8 minutes ago via web

I just voted for Trisomy 18 Bridge Of Hope Foundatio... to win $250k on Chase Community Giving! #chasegiving http://bit.ly/c3IY4Z9 minutes ago via web

I just voted for Molly Bear Foundation Inc to win $250k on Chase Community Giving! #chasegiving http://bit.ly/cPPOPr11 minutes ago via web

I just voted for Chromosome 18 Registry And Research... to win $250k on Chase Community Giving! #chasegiving http://bit.ly/avEgRf12 minutes ago via web

Trisomy 13 - Patau Syndrome NEWS

Poor Prenatal Diagnoses & Therapeutic Intervention

From SOFT- What Should We Do Now? Necessary Information After a Diagnosis of Trisomy 18-Edwards Syndrome or Trisomy 13- Patau Syndrome

SOFT New Family and Professional Support - Sharing your Trisomy 13 Patau Syndrome Story

Changing the Label - Trisomy Support for Families, Doctors & Other Professionals

What is Patau Syndrome Trisomy 13? What is the life expectancy?

Living with Trisomy 13 - Patau Syndrome

Trisomy Awareness

Annie's Story: an Ethical Tragedy

Latest News and Current Events & BLOG posts related to Trisomy 13 (Patau Syndrome)

Living IT! The TV Series - Ironmanforkids.com featured

Remembering Jedidiah - We're so Glad you Came...

Celebrating new LIFE -- another child reaches his loving mother's arms

our trisomy journey- God's gift of jedidiah joseph

quick update

our trisomy journey- God's gift of jedidiah joseph

New site information - A quick "how to use" and site updates

Annie's story is on the Canadian Patients for Patient Safety video!

Annie's story is on the Canadian Patients for Patient Safety video!! The group decided to post it on youtube. http://www.livingwithtrisomy13.org/memoriesofAnnie.htm

Seasons of Trisomy Calendar 2011

Seeking Trisomy Parents Whose Children Have Been Refused Medical Care in the US

Seeking Trisomy Parents Whose Children Have Been Refused Medical Care in the US

SPIN TO JOY - Special Trikes for Special Tykes!

Please Vote daily - Create a web based Doctor Referral for Trisomy 13 and 18

Goals

Project Sweet Peas

Sweet Peas~♥~has some exciting news to share! GOOD MORNING AMERICA

will be doing a story on Tuesday morning, (JULY 27th)! This is the first national media coverage for Project Sweet Peas since winning the Pepsi Refresh Grant ♥ Love, Peace, & Nimkee Blessings to you all ♥

2010 SOFT CONFERENCE PHOTOS

SOFT USA site now offering Family Page SUPPORT - ADD YOUR STORY

Sensory Severe Disabilities 2-2-10.wmv

Cheap Blood Test Could Detect Disorders in Fetus - Pregnancy - FOXNews.com

Analysis of Fathers age and Trisomic Anomalies

Help Support the TRISOMY SITES and VOTE Chase Community Giving

will be doing a story on Tuesday morning, (JULY 27th)! This is the first
national media coverage for Project Sweet Peas since winning the Pepsi
Refresh Grant ♥ Love, Peace, & Nimkee Blessings to you all ♥