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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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Ferol Jeanne Grode

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Born: October 3, 1995 

 

White Bear Lake, Minnesota - partial trisomy 13

 
 

 

Ferol is now 14 years old and in the 8TH Grade. She stands 5'3" and is 125 lbs. We started her with braces about a year ago now and she is doing so much better than anyone had imagined. A piece of bone from her right hip to bridge the gap in her upper right jaw from her cleft lip and pallet and now upper braces so she can actually get some teeth to line up for improved chewing. She sits still for the dentist better than I do. Other physicallities; she has become a full grown lady now and all that comes with it. (Dad is still getting used to the whole bra thing.)

Ferol still has occasional accidents with toileting during the day and must where a night time diaper at bed time. She can walk a mile and ride a tricycle with encouragement.

Ferol eats and drinks by mouth. She is still nonverbal but makes all kinds of songs that she sings to soothe everyone but her 16 year old brother Kegan. I call her my little mourning dove. She tries to talk as if she is telling a story but uses the same "word" with different intonations. much as a regular baby might when learning to talk. She also gestures like her Momma.

I respond as if I understand. She does use a communication device at school so others can understand her. Like a touch screen computer that actually talks for her,with many pictures and options.

Ferol is at a 3-4 year old level in most things. She is starting to finally move away from Blues Clues and Dora and on to other Disney Characters and the like. She loves her DVD's and all types of music and can ususally find and keep a beat to music in the car and the turn signal on the car as well. She is happy 95% of the time but can still throw a fit when tired or frustrated or in pain. The fits can lead to self injurious behaviors such as hitting her head with her hands or hitting her head on the hardest thing she can find which leads to one getting hurt trying to keep Ferol from hurting herself. We are getting better at anticipating this. Ferol loves school and is loved too by all her peers. I have seen her in action at school and she is definitely in her element their. She knows just what to do and is very attentive. This is her first year of school where she begins transitioning from reading writing and arithmetic to more life and community skills and hygiene etc.
Ferol goes to therapy 2-3 times a week and learns different exercises to improve her balance and fine /gross motor skills.

Ferol likes to use the computer and talks to her favorite Aunt on Skype every night where they sing songs and read books.

Thank you
Jim Grode
Inside Sales Representative
GP Companies Incorporated
888-474-5487 extension 127
myorder@gpcompanies.com
 

 

 Dad: Jim Grode 


Ferol & Mom

 

 
 

 Click here to E-Mail submitted: 2-9-05

 

Have a child living with Trisomy 13?  We would love to add your child to our Album.
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Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
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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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