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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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Trisomy13Archive.com


This is an archive of the LivingWithTrisomy13.org site (2005-2010) for current information please see:
http://www.livingwithtri13.org

To UPDATE AN ALBUM
please email Vanessa@livingwithtri13.org

In Loving Memory of This Treasured
Trisomy 13 Child

< Memories Page

 Van Harris Barja

Click here to send an update or photos

October 4, 2006 - November 9, 2006

   Charlotte, North Carolina (NC) - Full Trisomy 13    
 

 

I am Shea Barja, Van's grandmother. My email address is: bsbarja@yahoo.com

We knew in our hearts that Heaven was Van’s home and that he would only be with us for a short while. Still, it wasn’t easy to let him go. He arrived on October 4th, 2006 , after a normal pregnancy and delivery. Unknown to us during those nine months of joy and anticipation, Van was growing peacefully in my daughter-in-law’s womb with full trisomy 13. The doctors didn’t expect him to live through the night, much less the thirty six days in which he graced our presence.

Although I had four other grandchildren at the time, Van was the most beautiful baby I had ever seen. He had an aura about him that was indeed Heavenly. His time here was very intense for our whole family.

I admire my son and daughter-in-law for loving Van so lavishly, enjoying every minute with him, knowing it could be his last. It broke my heart to see my children suffer, just as my children hurt to watch their own child suffer. But I never prayed for Van’s healing. How could I ask God to fix one who was so perfect?

I only prayed for his comfort and that we could let Van go when it was time to say goodbye. Having Van was like winning the lottery. One out of five thousand babies are born with full trisomy 13. How fortunate and thankful we are that God entrusted us with such a wonderful gift as Van. He forever altered our lives, but we wouldn't have it any other way. We have scars, and wounds in our hearts that still break open and bleed, but scars tell stories, and Van’s is such a beautiful story, one that I am always happy to share.

Van’s mom is Robin Barja robin_barja@yahoo.com 



 

 

Submitted 7-2-08

 

Have a child living with Trisomy 13?  We would love to add your child to our Album.
Click here to send us their information. (Please note in the subject area if this is a Trisomy 13 photo as I do not open attachments unless I am aware of the sender.)
 
 


 
 

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 
 

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