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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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Living with Trisomy 13 - Patau's Syndrome

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Santiago Bernal

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Born April 21,2009

Chandler, Arizona (AZ) - Trisomy 13 ring chromosome

 

DON'T QUIT

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low, and the debts are high,
And you want to smile, but you frown a bit,
Rest if you must, but don't you quit.

Life is strange with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow,
You may succeed with another blow.

Success is failure turned inside out,
The silver tint of the clouds of doubt,
And you can never tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit,
It's when things seem worst
That you must not quit.

Author unknown

 

2-22-10

I am very happy to say he turned 10 months old yesterday, Feb. 21, 2010. Woo Hoo.. We have been truly blessed with your Santi baby. He has had some set backs and that's okay. He is now on oxygen full time in hopes that he will not have to work so hard to breath on his own. We are hoping by having him on the O2 full time he will now use the strength he was using to breath to grow and learn.

Santi has therapies 3 times a week, starting with Feeding on Wend. Developmental on Thurs. and Physical on Fridays. All though this may seem like a lot it is worth every bit.

There is nothing like watching your child do things that you were told would never happen. Santi plays with toys says DaDa.. and is learning others. He has come such a long way and has fought very hard to get where he is today. there's a poem that I found and it is a poem I look at every time i fell like the road is getting to rough, so I thought I would share it with all of you.

I hope when and if you every fell like the road is getting to rough you look back at this poem like I do and know that everything will work out at the end.  

Much Love
Tammie Bernal

- - - -  

12-15-09

Hello My name is Tammie Bernal My son's name is Santiago Bernal he was born April 21,2009 in Chandler Arizona. My E mail is bernaltammie@hotmail.com  I have a blog about Santi and his life thus far at http://santiagosstory.blogspot.com/. Santiago has a very uncommon form of Trisomy 13 called Trisomy 13 ring chromosome.

When Santi was born I was told that he was not going to live for very long, so we named him and hoped for a miracle. We got just that, Santi is a miracle he is now 7mo's old and going strong. He had open heart surgery on JUly 16th to repair a large VSD and now he is in PT, Developmental therapy and OT.

We are so very blessed that we have our son to this day. We still know that he may crash and we could lose him at any given moment, but as of now I have my son and I enjoy every min to every sec I have with him.

Tammie Bernal

 

Submitted 12-15-09

 

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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.)
 
 


 
 

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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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