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Living with Trisomy 13 - Patau's Syndrome

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Akima Lee Shaver

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Born October 20, 2000

  Mosaic Trisomy 13 - Orlando, Florida (FL)    
 

 

3-19-09
This is the Communication Device that Akima received from the Make-A-Wish Foundation of Central and Northern Florida


3-13-09
We had a wonderful shopping spree... These items were generously donated by Make a Wish of Northern and Central Fla. - 51 Pair of Pants, 8 Pair of Shoes, Books, Toys & 50 Shirts

THIS IS THE STORY OF AKIMA

AKIMA WAS BORN 10-20-2000 IN LEESBURG FLA. SHE WAS DUE ON HALLOWEEN BUT AKIMA WAS READY TO COME OUT. THE DR INDUCED MY LABOR ON 10-19-2000 AND KIMA WAS BORN AT 12:58 AM 10-20. AT FIRST THE DRS WERE THINKING THAT SHE HAD "FAS" BUT AFTER TESTING THEY FOUND OUT THAT SHE WAS ADDICTED TO CODINE (THE DR GOT IN TROUBLE FOR THAT) THEN THEY MENTIONED THAT SHE MIGHT HAVE A SLIGHT CASE OF THE DOWN SYNDROME AND SENT HER FOR BLOOD WORK THAT CAME BACK UNFOUNDED REASONINGS. WHEN WE WENT TO FIRST PED APPT SHE ADVISED ME THAT SHE WANTED AKIMA TO SEE A GENETIC DR IN ORLANDO, WE WENT ON 11-02-00 AND HAD A TEST DONE AND FOUND OUT ON 11-14-00 THAT AKIMA HAD "MOSAIC TRISOMY 13".

12-2000 AKIMA STARTED HAVING "G.I." PROBLEMS AND FOUND OUT THE SHE HAD "MALROTATION OF THE THE BOWELS" SHE WAS VOMITING POOP AND POOPING VOMIT IT WAS A SCARY SITUATION FOR ME BEING ONLY 17 AT THE TIME (YES I WAS VERY YOUNG)

IN FEB 2001 SHE HAD "FRONTAL LOBE" SURGERY AND AKIMA STARTED PROGRESSING A LITTLE FASTER AFTER THAT SHE STARTED TALKING (WHICH WOWED DRS)

AKIMA HAD 100'S OF DR APPT'S, THERAPIES, TESTS THAT WHOLE YEAR 04-02 I WANTED TO GET MY OWN PLACE IN ORLANDO SO I GAVE TEMP CUSTODY TO MY MOTHER (BIG MISTAKE) WHEN I CAME BACK (08-02) TO GET AKIMA SHE HAD A HEALING SKULL FRACTURE AND A BROKEN LEG. SHE WAS A LITTLE UNDER FEED DUE TO G-MA LEAVING HER WITH GREAT G-MA (75YR OLD) WHO ONLY FED AKIMA DRY TOAST AND MILK.

09-02 I TOOK AKIMA TO DR AND HE PASSED IT OFF LIKE IT DIDN'T MATTER THAT I THOUGHT SHE WAS INJURED (I WAS VERY UPSET)

10-02 I PUT AKIMA AND HER BABY SISTER TO SLEEP , I LEFT HER WITH MY THEN BOYFRIEND OF A YR TO WATCH THEM AS I RAN A QUICK ERRAND WHEN RETURNED HOME(15MINS LATER) POLICE, FIRE AMBULANCE AND CHILD PROTECTION WAS AT MY HOME HE SAID HE WAS TRYING TO PUT HER BACK TO SLEEP WHEN SHE SCREAMED & STARTLED HIM AND HE DROPPED HER ON THE GLASS COFFEE TABLE THEY ESCORTED ME TO THE HOSPITAL AND THEN REMOVED HER DUE TO MARK ON ENTIRE LEFT SIDE OF HEAD (NOSE TO BEHIND HER EAR), THE SKULL FRACTURE, AND THE BROKEN LEG.

10-02 THRU 06-07AKIMA WAS BOUNCED AROUND FROM GROUP HOMES TO FOSTER HOMES ALL WHICH USED HER DISABILITY AGAINST HER AND MADE HER DEPENDENT ON EVERYONE BUT HERSELF. I FOUGHT TO GET HER HOME I DID EVERYTHING THEY ASKED ME TO FROM GOING PARENTING CLASS TO GETTING A JOB THAT COULD PAY THE BILLS AND CARE FOR HER AND HER SISTER THEN 4 YRS LATER I GOT A "GOOD" CASEWORKER THAT MADE IT ALL HAPPEN SHE CAME HOME 06-19-2007 ONE WEEK AFTER MY 24TH BIRTHDAY AND TWO WEEKS AFTER I HAD MY LAST BABY I WAS HAPPY AND TIRED ALL AT THE SAME TIME I WAS JUST HAPPY THAT SHE WAS HOME

NOW HERE WE ARE TODAY HAPPY HEALTHY AND GRATEFUL TO GOD THAT WE HAVE MADE IT THIS FAR .

Angel Deas
aamt.2004@yahoo.com


Akima`s Sisters

 

 
 

 

Submitted 2-9-09

 

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Living with Trisomy 13
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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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