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.                                                                                                                                                                                                                          

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 ...

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

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
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