Trisomy 13 - Patau Syndrome NEWS

WE live, WE love, WE are forever changed after having a child with Patau Syndrome ~ Trisomy 13. WE are the families, OUR hearts have embraced these precious babies. With Dignity and Grace we each hold Our Child, Peacefully in Our Arms. WE are inspired to love more, live better and share this very unique life journey. WE have had a genuine encounter with pure love, WE are blessed, We've experienced the transformation of grief into “Thanksgiving Joy."

Wednesday, August 4, 2010

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

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

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Trisomy 13 (Patau Syndrome) Website Support Resources

To VIEW this BLOG (not embedded) within the Archived LWT13 site, open a new page and

Google Yahoo or Bing - side panel links do not work within the embedded page of the lwt13archive

trisomy13-patausyndrome.blogspot.com/

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VIDEO-Annie's Story: an Ethical Tragedy

*Archived 2005-2010 lwt13

*2011 Trisomy 13 - ADD Your Story

*YaHoo Group T13 message board

*FACEBOOK Lwt13 Community

*Seasons of Trisomy Calendar
*Trisomy Advocacy Group - HELP
*SOFT (USA) Support Organization For Trisomy 18, 13 and Related Disorders ~ Trisomy 13 Facts (*Celebrating 25 years helping families) *SOFT (International) Support Groups
*Faces of Trisomy

*BeNotAfraid.net BLOG (carry to term resources)

*Prenatal Partners for Life (carry to term resources)

*TRIS Tracking Rare Incidence Syndromes

*Ironman For Kids ~ S p i n t o J o y

*Noah's Never Ending Rainbow

*H o p e for Trisomy 13 & 18

*Trisomy Oz Prenatal Support ~ A Diary of Keeping Daniel

*Faces of Trisomy

*T's for Trisomy Order yours Now
*Trisomy 13 - CafePress - Mugs and MORE Products!!!!!

*Twitter - Follow - PatauSyndrome

*Google - Trisomy 13 News at a glance

*Google - Patau Syndrome News at a glance

*National Institutes of Health ~Trisomy 13

Office of Rare Diseases Research (ORDR) Genetic and Rare Diseases Information (GARD)

A Unique Soul ~ A Unique Purpose

Blessings Flow from our kids

~ Familes ~

*Inspired By A Child

*Touched By a Heart

*Choosing a Path Unknown

*Courage*Faith*Hope*Grace

*Sharing the Love

*Joy and Sorrow

*Making a Difference

*Sharing their Unique Story

*Making a Choice

*One Child at a Time

*Creating Change

*Because of Trisomy 13 child

*Hearts Changing the World

*A child with Patau Syndrome Inspired their parent(s) to:

2011 Eva - Eva's Gift

2010 Malek - Webmaster livingwithtrisomy13

2009 Michael - (Video) Sea of Callas

2008 Annika - moderator YaHoo groups, discussion boards

2007 Faith Constance - (Video) Patau Syndrome-Trisomy Awareness

2007 *Joey, and Seasons of Trisomy Calendar

2007 Bennett-Chadlin - Sweet Peas Project

2007 Nathan - Creating Priceless Memories Keepsakes

2007 Daniel - Online Book: a diary of keeping Daniel

2006 Katherine - Katherine Elizabeth Foundation

2006 Kambry - Kambry's Light

2006 Serena - Support for Considering Termination, MISS

2005 Annie - (Video)Annie's Story: an Ethical Tragedy ~ International Speaker and Patient Advocate

2005 Anthony - Emmanuel's Foundation

2005 Gemma - Gemma Bears

2005 Natalia-Marie - Inspired Apke Web Services to help create the LWT13 site.

2005 Maria - her photo inspired the LWT13 Archived website

2005 Mollie - was adopted by her foster parents

2004 Kia - (Video) Trisomy Awareness

2003 Tucker inspired us to adopt Joey (*2007)

2001 Josiah - visiting a new family, offering HOPE Trisomy13Survivors

***still developing this list from creative Trisomy Awareness efforts. Send me your information.

Search Google Scholar for Trisomy 13 & Patau Syndrome Current and outdated Literature

NOTE: The LivingWithTrisomy13 site started in 2005..Now Archived 2005-2010. Most of the Scholar articles and publications you'll notice are before 2005. You will find very few CURRENT articles or Published writing within Medical Journals after 2010. Few that pull in the MANY Living Survivors. There are some in the works.. 2011, but these do take time.. This is why its so very important that families find others who've travled this journey. No Professional has seen 300+ Trisomy13 kids. Any one Professional may have seen a handful. Go to SOFT USA to get the most CURRENT Information and Trisomy13 Publications. Dr. John Carey is SOFT's Medical Advisor. SOFT Celebrates Supporting Trisomy 18 and 13 Families for 25 yrs. You can click these links for the google search of scholar articles. AGAIN NOTE: You will find very few CURRENT articles or Published writing within Medical Journals after 2010. Few that pull in the MANY Living Survivors of the 100+Living Survivors from the LWT13 http://www.trisomy13archive.com and SOFT http://www.trisomy.org Communities.

Trisomy 13 Patau Syndrome

Lethal Language, Lethal Decisions

A Change in Awareness ~ Yes We Can, with Dignity and Grace

A Precious Child ~ Worthy of Love ~ Treasured Memories In recent years we have seen an increasing number of women and families who are embracing what is before them, growing in love and attempting to carry a trisomy 13 child to term. Some families have made the decision to only provide Perinatal Hospice and some have decided to offer some Medical Intervention. With a team of Professionals Supporting these Families, this Life Changing Experience can be turned from Sorrow to Thanksgiving Joy.

HOPE, not false hope, REALISTIC HOPE of time with your child.

At-A-Glance ~ Images on the Living With Trisomy 13 site. Families Embracing Life ~ One Moment at a Time Hope is a real need, as real as the need for food and water. Without hope survival itself is threatened. This Website offers realistic hope whatever the outcome may be. You will be loved and supported throughout this traumatic life experience by the members of this site. We urge any person in the Medical or Affiliated fields who come into contact with parents or children, where there is a diagnosis of Trisomy 13/18 to be custodians of this hope. We firmly believe this is part of your duty of care towards us and our children as Health Professionals. Thomas & Angela Whittle, parents to Thomas Adelaide, Australia.

Please visit the Living with Trisomy 13 website to view over 300 Family Stories and support resources.

Misinformation ~ on the Internet

Families given a genetic profile of Trisomy 13 & Patau Syndrome need to navigate the many resources available and need to sort through those with misinformation stating Trisomy 13 & Patau Syndrome is always fatal. You can see from the many Living Survivors that the term "always fatal" is not universally accurate as some do survive for years. A child does not die from Trisomy 13, they die due to medical related complications which are uniquely different and individual to each child. A severe heart defect, holoprosencephaly or many other related medical issues. Here are some of the websites and or articles that continually pass on misinformation. You will need to sort through the terms as some are comments helping to clarify this traveling misinformation. Trisomy 13 "always fatal" Patau Syndrome "always fatal" Trisomy 13 Patau Syndrome "always fatal"

Trisomy 13 - Patau Syndrome NEWS

Wednesday, August 4, 2010

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

Goals

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Trisomy 13 (Patau Syndrome) Website Support Resources

VIDEO-Annie's Story: an Ethical Tragedy

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Search Google Scholar for Trisomy 13 & Patau Syndrome Current and outdated Literature

Lethal Language, Lethal Decisions

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Trisomy 13 Awarenes, Information Package

A Change in Awareness ~ Yes We Can, with Dignity and Grace

HOPE, not false hope, REALISTIC HOPE of time with your child.

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Misinformation ~ on the Internet

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EHD in Utero movies..AMAZING!

Visit these Trisomy 13 Patau Syndrome Family Blogs

Embracing Life ~ One Moment at a Time