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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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Zafira Kamilah Nur

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Born: Feb 1st, 2008

  Jakarta, Indonesia    
 
10-27-08

Hi, I just want to share the latest Zafira pictures, she is now 6.3 kilo, 65cm, she still can not sit or roll over, but she love to smile to people, her brothers love her too, they say she is the most beautiful baby in whole world.. Here are also the picture when she was hospitalize because of measles.

7-16-08

Zafira now 5 mos almost 6, she is 5.32 Kg, her head circumference now 34 cm, we havent fix her cleft lip, because she has seizures, doctor give her diazepam 3 times a day.

 

5-2-08

Fira spent her first 2 months in NICU because she get BP (pneumonia) she was on the ventilator for about 1 month. She is home now, gaining weight, smiling and now trying to lift her head.

She’s been diagnosed with microcephaly, holoprosencephaly, and spina bifida. She attend PT twice a week.

Warm Regards,
Dian

Dian Arifin
dindut_id@yahoo.com
 

 

Submitted 5-2-08

 

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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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