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Living with Trisomy 13 - Patau's Syndrome

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Victoria Sofia Peña Vaccaro

Click here to send an update or photos

Born: September 7, 2007 

  Capital Federal - Argentina - Trisomy Mosaic

Mariana Vaccaro (Argentina) is available for immediate support
      0054903414544721 or  marianactriz@hotmail.com


Speaks Spanish and English
   
  5-6-10
 

4-30-10
Here are some more photos current inventory of Vico, in a few days I will send some of their 1st day of kindergarten.
Mariana Vaccaro



 4-29-10
Victoria  is 31 months and in April began kindergarten, concurs with children "normal" and has besides the classroom teacher of a special educational assistance to accomplish their tasks. Still will not talk much, just say: Mom, Dad, Papa (that means you want to eat) and apa (When you want the sit on my lap) but the most wonderful thing is that for example when you want to watch Disney Channel she takes the remote control and is playing the keys until she manages to get the channel she wanted. When she wants water, or take the bottle she goes to the fridge, opens it and takes what she wants. Also known to place the arms into the sleeves when I change clothes and puts her feet forward when putting on socks and shoes. She learned to stand alone on the swings and throws one of the slide in the square. My heart explodes with happiness with so many wonderful things progress and what she’s learned. Ojala many physicians would understand that what the books say it is not always 100% true ... there are miracles of love ... and Vico is one of them ....
We live in Argentina and here they immediately tell you that "T13 is incompatible with life itself "and Victoria is not only God’s miracle and of love, but a miracle for the doctors, so I would really like to be part of this page to share this our history with a lot of people. I don’t speak English very well and not to mention writing....Victoria Sofia Peña Vaccaro

9-1-09

Hi I'm friend of Mariana Vaccaro and lately I been taking pics of little Vico i would love to share them with you, hope you like them!
Misato Katsuragui

5-4-09

When I was going through the 14th week of pregnancy, we knew that our daughter had something called T13. At first we didn’t understand, but doctors assured us that it was not compatible with life itself and it would do no good to go on with my pregnancy. We look for other opinions and everyone of them with the same answer……. It is not compatible with life, it’s nonsense to go on…..but there was a voice inside of me that said that I could GO ON, and so I did….

10:10 am of September Friday 07th, 2007 , came Victoria Sofía, "Vico" to this world and then it started our fight ti help her live, in spite of what doctors expected that every day was supposed to be the last one… even if she got better and showed signs of getting better.

Months went through and Vico kept on getting better through every obstacle. We began Early stimulation since month 2: Language therapy (lic. Stella Granatto), neurology (lic. Emilia Digistani), Mobility (lic. Karina Carballo) Visual (lic. Mercedes Podestá)

At first everything was slow and with no rewards, but with patience and dedication, today we can say that our princess is almost like any baby of her age, because his mature delay is just a few months, her movement performance is normal, and gets feed like any kid her age. She plays, watches television, likes music, and going for a walk and investigate everything that is around her.

But something is true, if she is not the center of the attention she gets offended!!

On march 18th, 2009 she went through a heart operation, because she had intra-ventricular communication. Her heart doctor, Dr. Christina Cook, gave us confidence to make that decision and she couldn’t be more right, because 4 days later we had our princess at home like nothing happened.

A few days later, her life was normal, but of course she begun to eat huge tons of food, anytime, and every kind of it, which helped her gain weight again.

Our emails are marianactriz@hotmail.com  and elcole22@hotmail.com (Osman, Vico’s dad) anyone is welcome to communicate with us, we will be delighted to be able to help.
Here are a few pictures for you to know our little princess …


   


- - -
Spanish
Vivimos en Argentina y aqui enseguida te dicen que la trisomia 13 es incompatible con la vida y Victoria no solo es un milagro de Dios y de amor sino un milagro para los medicos y me gustaria mucho poder formar parte de esta pagina para hacer llegar nuestra historia a mucha gente.No hablo ingles muy bien y menos lo escribo pero si quieren pueden traducir lo q pongo.
Muchas gracias


Victoria Sofia Peña Vaccaro

07/09/2007.Capital Federal-Argentina

Cuando cursaba la semana 14 de embarazo supimos que nuestra hija tendría algo llamado TRISOMIA 13, nada entendimos al principio pero los médicos aseguraron que era incompatible con la vida y de nada servía seguir adelante con el embarazo. Buscamos otras opiniones y todos concluían sus discursos con la misma respuesta…no es compatible con la vida, es en vano seguir adelante…dentro mío había una voz que me decía que SI SE PODÍA…y seguí…
10:10 am del Viernes 07/09/07 llegó Victoria Sofía, “Vico” a este mundo y ahí comenzó nuestra lucha por ayudarla a vivir muy a pesar que los médicos esperaban que cada día fuera el último, aunque ella mejorara y mostrase indicios de superación.
Pasaron los meses y Vico siguió mejorando cada obstáculo. Comenzamos estimulación temprana a partir de los 2 meses de vida: Fonoudiológica (lic. Stella Granatto) neurológica (lic. Emilia Digistani) motora (lic. Karina Carballo) visual (lic. Mercedes Podestá) Al principio todo era lento y sin muchas recompensas pero con paciencia y dedicación hoy podemos decir que nuestra princesa es casi como cualquier nena de su edad porque su retraso madurativo es de apenas unos meses ,su motricidad es normal, se alimenta como cualquier niño de su edad, Juega, mira televisión, le gusta la música, pasear e investigar todo a su alrededor. Eso si, si no es el centro de las miradas y punto de conversación se ofende!
El 18/03/2009 la operaron del corazón porque tenía una comunicación intraventricular. Su cardióloga, la Dra. Cristina Cook fue quién más confianza nos dio para tomar la decisión y no me equivoqué porque solo 4 días después estábamos volviendo a casa con la princesa casi como si nada le hubiese pasado. Alos pocos días ya hacía su vida normal, eso si, empezó a comer cantidades enormes de comida, a toda hora y de todo tipo y de golpe, en menos de un mes aumentó muchísimo de peso.
Nuestros mails son marianactriz@hotmail.com y elcole22@hotmail.com (Osman, papá de Vico) quien quiera comunicarse con nosotros por cualquier duda o consulta estaremos felices de poder ayudar.
Estas son algunas fotos para q conozcan a la princesita…
 

 

Submitted 5-4-09

 

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.)
 
 


 
 

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All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
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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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