Trisomy 13 LIFE Celebrates our Children and Families Summer Fun

              

Summer and Water 13 Fun 2016
To view the images in large view click to the Trisomy 13 LIFE  facebook Group.

Look to the SOFT Website for the latest on Trisomy Research and Publications
SOFT Support Organization for Trisomy 18, 13 and Related Disorders
Trisomy.org
LIKE the Social Media areas associated with the Living with Trisomy 13 Community
Trisomy 13 LIFE
GROUP facebook.com/groups/Trisomy13
PAGE facebook.com/Trisomy13LIFE
BLOG Trisomy13Life.blogspot.com
TWITTER @trisomy13patau
twitter.com/trisomy13patau

Trisomy 13 LIFE Celebrates our Father's ~ Loving their child Living with Patau Syndrome.

The Trisomy 13 Life - Living with Trisomy 13 Community wishes a s Happy Father's Day to our Father's having children diagnosed with Trisomy 13 ~ Patau Syndrome.
Those caring for living children now and those with treasured memories. 
Please feel free to add your Father and me photo in the comments if you missed submitting one. 
To view the photos in LARGER View see the message thread.

Follow the RECENTLY ADDED Photos on this link below.
https://www.facebook.com/groups/Trisomy13/permalink/10154339304591336/

Happy Mother's Day from the Living with trisomy 13 Patau Syndrome Community

Happy Mother's Day to our many Trisomy 13 Mother's 
Those caring for living children now and those with Treasure Memories. Please feel free to add your Mother and me photo in the comments if you missed submitting one. 

A special Thank You to Shannon, Delainey's Mother for helping us put these collages together. Look forward to another in June for Father's Day.


www.LivingWithTrisomy13.org 

Currently rolling to the facebook public support group.

Study - Patau Syndrome - Trisomy 13 survive longer with intensive treatment.

Tsukada, et al 2015 Better Prognosis in Newborns with Trisomy 13 Who Received Intensive Treatments: A Retrospective Study of 16 Patients . Cell Biochem Biophys. 2012 Jul; 63(3): 191–198. Published online 2012 Apr 10. doi: 10.1007/s12013-012-9355-0

The patients who received intensive treatments survived longer compared to the previous data. This study provides useful information concerning genetic counseling, especially from an ethical point of view, before providing intensive management to newborns with trisomy 13.

‪#‎Trisomy13‬ ‪#‎Prognosis‬ ‪#‎Intensivetreatment‬ ‪#‎Survival‬ ‪#‎Naturalhistory‬

Patau Pataus - Edward Edwards - Down Downs - What is the correct Trisomy Syndrome name?

Trisomy Syndromes named after the Physician who described the genetic disorder. A trisomy is a type of polysomy in which there are three instances of a particular chromosome, instead of the normal two. A trisomy is a type of aneuploidy
(an abnormal number of chromosomes). https://en.wikipedia.org/wiki/Trisomy Trisomy 13 Patau Syndrome https://en.wikipedia.org/wiki/Klaus_Patau

https://en.wikipedia.org/wiki/Patau_syndrome Trisomy 18 Edwards Syndrome https://en.wikipedia.org/wiki/John_H._Edwards https://en.wikipedia.org/wiki/Edwards_syndrome Trisomy 21 Down Syndrome https://en.wikipedia.org/wiki/John_Langdon_Down https://en.wikipedia.org/wiki/Down_syndrome The internet has many confused folks writing what they will...

Here the are correct terms for the trisomy 13, 18 and 21 Syndromes. Patau, Edwards and Down. Only Edwards has an S.
You'll see many switching these names up with and or without the S but the correct terms for these are - Patau Syndrome, Edwards Syndrome and Down Syndrome.

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 presentation. Please share with your social networks, friends and medical providers. https://www.youtube.com/watch?v=9_wmI0UQLEo

Perinatal Hospice Palliative Medical Symptoms Treatment Trisomy 13 Prognosis life expectancy
Cardiac Surgery Survival - Research that Matters

World Patau Syndrome Day - March 13th

World Patau Syndrome Day 2016 March 13th
Meet Our Families
Living with Trisomy 13
www.livingwithtrisomy13.org

Preborn, Prenatal, Living and Treasured Memories
Trisomy 13 Life Expectancy

Wearing Yellow for  

World Patau Syndrome Day
International - Global - World  

March 13th is Trisomy 13 Awareness Day

Collage of Trisomy 13 LIFE  fb group shared photos.

Treasured Memory and Living Children Families 

www.facebook.com/groups/Trisomy13
Twitter -  @trisomy13patau