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Living with Trisomy 13 - Patau's Syndrome

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Autumn Troy      

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 Born: August 31, 1987

 

Houston, Texas (TX) - Partial trisomy 13 with partial trisomy 11 or 17 mosaic

Update: October 2005
Autumn has just turned 18 and is in 12th grade in a public high school. Her main issues have been a motor and speech delay, and general developmental delay. She was very fortunate not to have been born with heart or other organ problems and has always been very healthy. In her first 14 months she had five surgeries to repair a cleft lip and palate and strabismus. At ages 5 and 6 she had revisions to her lip surgery. (I would love for her to have further revision of her lip and nose but she’s 18 now and is content with how she looks. We should all be so lucky!) She has gone back and forth between private and public schools—whichever seemed best at the time—and is presently happy in a life skills class at a public high school. Autumn can read at around a 3rd grade level and is in love with literature in any form. She has accumulated a large library of books, videos, and DVDs and is a trivia queen when it comes to writers, actors, composers of musical scores and other aspects of the entertainment industry. We have been very fortunate to have excellent teachers that cooperate with us when we make requests (or “demands,” depending on how they’re expressed). We insist that Autumn be sent out of the classroom for one-on-one reading, and I’ve made arrangements with her classroom teacher to assign her spelling words taken from whatever book she is currently obsessed with. He has been wonderful to pick 10-15 words that challenge her, and Autumn and I decide when she’s ready to be tested on them. She has had speech therapy (private and school-related) since she was 12 months old, receives occupational therapy twice a week at home, and for awhile had a music therapist at home, but the therapist accepted a job with a school district and we haven’t found one to replace her yet. We’re very active in Special Olympics. Autumn’s sports are equestrian and bowling. She adores horses and her riding skills are slowly progressing. She can trot for short distances now. Since she has recently turned 18, we are in the process of establishing legal guardianship with a court date next week, and we have been looking around for the past couple of years for a future residential facility that we can be excited about. I think we’ve found it!

Janet Troy  sjat@clearsail.net
 


12th Grade


Autumn at 17 in her riding helmet

,/P.
Autumn at 16 months old


Autumn at 10 minutes old

 

 

submitted:: 10-13-05

 

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Text and graphics © LivingWithTrisomy13.org 2005-2007 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 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.
 

Looking for ALL families who’ve had a trisomy child of any number. Whether you terminated, miscarriage, had a stillbirth, live birth - living or deceased. Including adoptive and Foster parents. Please fill out the TRIS survey  to help update the medical literature and to improve the quality and availability of medical care. Tracking Rare Incidence Syndromes (TRIS)  Click here to add your information

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