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Saturday, April 9, 2016

Dr Martin Mc Caffrey, Clinical Professor Neonatal-Perinatal Medicine, speaking on Perinatal Hospice




Published on Mar 31, 2016
DR. MARTIN MCCAFFREY, USA Clinical Professor in Neonatal-Perinatal Medicine at UNC Chapel Hill & Director PQCNC speaking at the Perinatal Conference on 30 January 2016 in Dublin. 

A wonderful much needed presentation on the current issues which face newly diagnosed trisomy 13 and 18 families. Professionals who care for these children would benefit by taking the time to view this well put together presention. Please share with your social networks, friends and medical providers. https://www.youtube.com/watch?v=3oC9a8Yn15c

Tuesday, February 9, 2016

Survival of chidrren with trisomy 13 Patau Syndrome - A population based study

From the National Center for Biotechnology InformationPubMed.gov
US National Library of Medicine National Institutes of Health

 2015 Dec 10. doi: 10.1002/ajmg.a.37495. [Epub ahead of print]

Survival of children with trisomy 13 and trisomy 18: A multi-state population-based study.
http://www.ncbi.nlm.nih.gov/pubmed/26663415
For both trisomies, gestational age was the strongest predictor of mortality.... 
This study found survival among children with T13 and T18 to be somewhat higher than those previously reported in the literature, consistent with recent studies reporting improved survival following more aggressive medical intervention for these children.  READ MORE

Trisomy 13 Patau Syndrome Changing Perspectives - Improved Outcomes With Intensive Care at Birth

From the National Center for Biotechnology InformationPubMed.gov
US National Library of Medicine National Institutes of Health


 2016;35(1):31-6. doi: 10.1891/0730-0832.35.1.31.

Trisomy 13: Changing Perspectives.

http://www.ncbi.nlm.nih.gov/pubmed/26842537

Within this Publication: Recent literature suggests there are improved outcomes in infants who receive intensive care at birth. READ MORE

Sunday, January 10, 2016

Trisomy 13 Life ~ Patau Syndrome Medical Care = Long TermSurvivor

Trisomy 13 Prognosis & Trisomy 13 Life Expectancy 
While there is no specific treatment for "Trisomy 13"
There is effective 
Precision Medicine‬
and much 
progress,  
lessons learned, 
for effective medical management
for the 
many trisomy 13 related medical conditions.
You can follow other families with trisomy 13 Patau Syndrome survivors at
www.livingwithtrisomy13.org (Public Trisomy 13 Daily Life facebook Group)
and www.trisomy13life.com (Public Trisomy 13 Life facebook Page)                                      

Each child presents their own unique medical issues with their trisomy 13 variation. Whether full (complete), partial, translocation or mosaic.  There is Care book and a wealth of relevant literature on several of the trisomy support sites, including
SOFT Support Organization for Trisomy 18 13 and Related Disorders www.trisomy.org 
Be sure to view SOFT's Dear Health Professional page   Be sure to view SOFT's drop down Professional MENU   Professional Literature:   Cardiac Surgery, Ethics, Management 
as well as the TRIS Tracking Rare Incidence Syndrome site. Publications and Presentations  http://tris.siu.edu/publications-presentations/index.html
You can follow other families with trisomy 13 Patau Syndrome survivors at
www.livingwithtrisomy13.org (Public Trisomy 13 Daily Life facebook Group) and www.trisomy13life.com (Public Trisomy 13 Life facebook Page)
                                                                                                                                                                     




Natalia in a quick 9 photos sharing what is possible with good medical care. Medically treating what we could to help Natalia live comfortably within this trisomy 13 syndrome. I was told by her first teacher, that "Natalia was the most well adjusted child she's ever seen, given all her limitations."
I think its all about attitude. She awakes happy and so starts our day.
Full of Love and JOY. I am too Blessed to be Stressed and have an Attitude of Gratitude for this entire journey. I accept it all knowing God will continue to shower graces upon us as we continue to Sing Glorious Songs of Praise for her life. Natalia like all these Trisomy 13 kids are Miracles in Progress. Our only job is to love them unconditionally and celebrate each wonderful milestone.

Natalia has full, complete trisomy 13, also called Patau Syndrome. Our Trisomy 13 Journey with her as been one of becoming an advocate for those sharing this trisomy 13 journey. From the living with trisomy 13 community to trisomy 13 daily life, we continue to share trisomy 13 awareness helping the newly diagnosed families and those with living survivors live with this unique rare conditions. Some call it a rare disease, but its a syndrome.
                                                                                                                                                                                                                          

Saturday, January 9, 2016

New Eyes: To Caleb

New Eyes: To Caleb: A smile Cooing Laughter Calling Eyes which shimmer even if there is no light in them A body which sways back and forth Excitement in ...

Sunday, January 3, 2016

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

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
Families caring for Trisomy Babies and Children can be found on the Facebook Support Group.
www.facebook.com/groups/TrisomySOFT
www.facebook.com/groups/Trisomy13 

Wednesday, September 30, 2015

Trisomy.org is the internet’s most complete source of medical and family resources for trisomy 18 & 13

NEW WEBSITE HOME PAGE Design..
What is Trisomy 18?
What is Trisomy 13?
What are the Related Disorders?

Trisomy 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22



So much information... Click here to go DIRECTLY to the Trisomy.org website.
Slideshow, Videos, Family Stories, Professional Articles and Literature, E-care book,
Facebook Page and Group support communities where families gather to share their experiences.


TAM Postcard front

Tuesday, September 8, 2015

Trisomy 13 Syndrome ~ Patau Syndrome ~ Life Expectancy ~ Medical treatments and care for children - a free download!

www.trisomy.org 
Having a Living Survivor with full trisomy 13, www.Trisomy.org is my go-to site for the last 15 years when searching for family support information or professional resources to share with Natalia's Doctors and Therapists. Please check out their HOME Page of the website. They have a wealth of information. ~ ThereseAnn, mom to Natalia Marie (Living with Trisomy 13, 15 years old in 2015)
*Click here for Natalia Marie's SOFT story page

SOFT is the internet’s most complete source of medical and family resources for trisomy 18 & 13.


“The Carebook:” The nationally recognized book about caring for children with trisomy 18 and 13 – a free download!

What is Trisomy 18? or 13? or Related Disorders?
 Trisomy 18 occurs in about 1 in 7,000 live births and is the result of an extra copy of the 18th chromosome being present in cells.read Trisomy 18 Facts.
 Trisomy 13 occurs in about 1 in 10,000 live births and is the result of an extra copy of the 13th chromosome being present in cells.read Trisomy 13 Facts.

Thursday, August 6, 2015

Trisomy 13 LIFE facebook Group 2015 - Families Transformed by Love


PRENATAL, PRE-BORN, LIVING and GRIEF Support.Trisomy13LIFE families, through their own grief and pain, reach out to help others on this very unique journey with Trisomy 13. All these families have lived and are living with a Trisomy 13 diagnosis and the reality of how it changes lives. With Courage, Grace, and Hope they continue on. Experiencing the transformation of grief into “Thanksgiving JOY.”
Many families gathering together again from the
Original Living with Trisomy 13 .org Community.


Thursday, February 19, 2015

Trisomy 18, Trisomy 13 Awareness Month (March) - Follow www.TRISOMY.ORG and Facebook Pages for events


ITS THAT TIME OF YEAR AGAIN. CELEBRATING TRISOMY AWARENESS MONTH
MARCH 2015
FOLLOW THE www.TRISOMY.ORG EVENTS on the website and Facebook Pages

www.trisomy.org

SOFT Support Organization for Trisomy 18, 13 and Related Disorders
https://www.facebook.com/Trisomy18.Trisomy13.Awareness.SOFTrelatedDisorders

SOFT'S Annual Trisomy Awareness Page
United and Together we Stand... Trisomy Strong
 
https://www.facebook.com/TrisomyAwareness.SOFT

Submit your: Trisomy Child's Story &  Jumping 4 Trisomy Videos,
Purchase  tee shirts, bumper stickers, trisomy strong wristbands and more...
Create a Facebook Trisomy Awareness Profile photo and add a 
Trisomy Awareness banner to your Facebook page.
(use the facebook links above the photo)

Contact SOFT www.trisomy.org or www.trisomytalk.com for more info

Wednesday, January 21, 2015

"Every Life is a Gift" March for Life DC and Walk for Life West Coast - Highlighting the Challenging Prenatal Diagnosis of Trisomy 21, Trisomy 18, Trisomy 13 and Spina Bifida

WATCH MARCH FOR LIFE EVENTS NOW on
EWTN 
Eternal Word Television Network

http://www.ewtn.com (you can view off the website,  EWTN APP or check your local listing for the EWTN schedule).

I was very happy to see the March for Life 2015 theme is “Every Life is a Gift.”
They are addressing the challenging prenatal journey when families are given a poor prenatal diagnosis, highlighting the trisomy experience and many pressures put upon women and families to abort these unique babies.


EWTN TV  will be following the PRO-LIFE events

March for Life 2015 DC http://marchforlife.org/

Walk for Life 2015 West Coast http://www.walkforlifewc.com/

Pray with the Bishops to End Abortion 
On January 22 our nation will mark the 42nd anniversary of Roe v. Wade, the Supreme Court decision that made abortion legal throughout the U.S.
Since that tragic decision, more than 56 million children's lives have been lost to abortion, and many suffer that loss -- often in silence. 
Join thousands of Catholics across the country coming together in prayer for a "culture of life" from Saturday, January 17 -  Sunday, January 25!
http://www.usccb.org/about/pro-life-activities/january-roe-events/nine-days-of-prayer-penance-and-pilgrimage.cfm

Remember the UNBORN Powerful Virtual Video Memorial click here


Motherhood And The Gift Of The “Rite For The Blessing Of A Child In The Womb” - United States Conference of Catholic Bishops

The Rite for the Blessing of the Child in the Womb can be done by a priest or deacon and is available in English and Spanish.  The Rite opens with readings of the Visitation, the Annunciation, the prophecy of Sarah’s conception of Isaac, or other similar readings.  It includes a blessing for the mother to “grant her comfort in all anxiety and make her determined to lead her child along the ways of salvation,” the text reads.  And there is a blessing for the father to “grant him courage in this new responsibility and make him an example of justice and truth for this child.”  An excerpt of the blessing reads:  Click for PDF (English and Spanish) 

Trisomy 13 Life Worth Living 

I've added a January 2015 update on Natalia's most recent progress on her SOFT Story page. Click here http://trisomy.org/?our-story=natalia-marie

Be sure to visit the SOFT website and Facebook Page for daily updates on trisomy living.
Click here http://trisomy.org

Sunday, August 17, 2014

Trisomy Support at SOFT at www.Trisomy.org (regarding broken url links)

These Trisomy Resources will help you find support within your Trisomy Journey

SOFT Support Organization for Trisomy 18, Trisomy 13 and Related Trisomy Disorders
www.trisomy.org - FREE Care of the trisomy infant and child EBOOK
Natalia's SOFT story

ITA International Trisomy Alliance
www.internationaltrisomyalliance.com
FREE Preparing for your child's arrival and children's books which explain the trisomy 18 and trisomy 13 facts - International translations

TRIS Tracking Rare Incidence Syndromes  www.coehs.siu.edu/tris
Ongoing study project many trisomy case studies and publications.

7/15/2014 
SOFT CHANGED SERVERS AS THEY ARE GROWING WITH ALL THE WONDERFUL
TRISOMY AWARENESS FAMILY, PROFESSIONAL AND MEDICAL CARE SUPPORT.
It will take some time for me to adjust all the LINKS on this blog going to specific SOFT areas on the SOFT website. If you come upon any broken links as you arrive on the SOFT website,  just continue to the SOFT HOME page and SEARCH for the topic you are looking for.

Friday, April 4, 2014

If your Trisomy Baby Could talk... making the right decisions for your Trisomy Journey

To all the Trisomy Parents wondering what decisions to make after their child's diagnosis...
Prenatal or Postnatal (afterbirth diagnosis) 
Carrying to Term, Perinatal Hospice, Palliative Support, 
Medical Treatment, Surgical Intervention and Supportive Living Care.
If your Baby could talk... this is what your baby would say...   
View on youtube - https://www.youtube.com/watch?v=kXtllFhGOsI

View on youtube - https://www.youtube.com/watch?v=kXtllFhGOsI

NEW FAMILY FREE INFORMATION PACKET at www.TRISOMY.org
LIKE and FOLLOW Trisomy.org's Facebook Page and Group













International Trisomy Alliance http://www.internationaltrisomyalliance.com
ITA publications you can download and print FREE
























Thursday, March 13, 2014

March is Trisomy Awareness Month

www.TRISOMY.org

Free Information & Literature for  Families:  Clicking this link takes you to a brief form which, when completed, opens a page with many free documents about trisomy.  Select what interests you and read, print or save it.    This free information includes Trisomy 18, Trisomy 13 and Other Chromosome Disorders fact sheets, growth and surgery information, an explanation of common problems, sample newsletter,  conference and book order information, and much more.   At the bottom of this home page, several helpful and inexpensive books can be ordered.  Para  documentos en espaƱol, clic aqua.

 Trisomy 18 – What is it? …click to read “Trisomy 18 Facts.“  This syndrome is a disorder of human chromosomes which occurs in approximately 1 in 7,000 live born infants, due to the presence of an extra #18 chromosome…

 Trisomy 13 – What is it? …click to read “Trisomy 13 Facts.  This syndrome is a disorder of human chromosomes which occurs in approximately 1 in 10,000 live born infants, due to the presence of an extra #13 chromosome…

♥ Other Trisomy or Related Conditions:      Many families have children with other chromosomal disorders. Perhaps the best explanation for these many disorders is found in a Related Disorder Facts presentation by Dr. Stephen Braddock, Professor of Clinical Genetics, given at a SOFT Conference. Also, read about Dr. John Carey’s presentation at a  SOFT conference.   A useful video can be found here.













3 Tickets for $10 or
9 Tickets for $25
Enter as often as you’d like during the month of MARCH!
Winners name will be draw by SOFT’s President, Barb VanHerreweghe on March 31st
When DONATING, be sure to ADD the term *SPECIAL TREATS JAR RAFFLE* in the Special Purpose Donations BOX right above the SEND MY DONATION button.
http://trisomy.org/about-us-trisomy/donate-to-soft/ 

* A big THANK YOU to Penny, Devon’s momhttp://trisomy.org/our-story/devon-victor/ who created this Special Treats Jar. (Valued at $80)
1) A special needs child being pushed by an Angel surrounded by flowers, butterflies, dragonflies under a Rainbow in the Heavenly Clouds
2) Heavenly Angels over the rainbow, grabbing the balloons rising to the heavens
3) Tree of Life where birds, butterflies and dragonflies gather
4) A families love is shared around the world

You can see more of Penny’s creative talents on her Facebook page Clay Cuties by Pennyhttps://www.facebook.com/ClayCutiesbyPenny