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LivingWithTrisomy13.org

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In Loving Memory of This Treasured
Trisomy 13 Child

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Alea Grace Frayer

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June 23, 2006

  Norwich, New York NY - Full Trisomy 13    
   
"She has touched our lives forever and I don't regret any part of what I had to go through to get her. God gives life for a reason, and it is His to take at His will not ours. My husband and I have always said her life will never be in vain, because if we can touch another life through hers its worth it all."


 

Hi, my name is Rena Frayer and my husband is Matt Frayer. We lost our daughter to trisomy 13 on June 23, 2006. She was born c-section and lived for only 2 hrs. She died in my arms in the recovery room. She had a diaphramic hernia and multiple heart complications. She also had a cleft lip and pallet. It was very trying.

My husband is a Baptist preacher, and we had lots of support to get through the loss of her, it still was very trying to our faith. We were going to name her something completely different, but after we found out she was sick we decided to go with Alea Grace standing for always leaving everyone aware of God's Grace.

We found out in the middle of May she had a diaphramic hernia which we knew was very hard to deal with for a child. I developed Preeclampsia and my kidneys started to shut down. I went into the hosp on a Friday, the transported me to a high risk hosp on Sunday. They did an ultrasound to confirm the hernia and check her heart. On Tuesday the did a amino to check for trisomy 13, 18, and 21 of course we prayed for none or trisomy 21.

Wed we found out my precious little one had a not compatible with life trisomy 13. I was 31 weeks along and was not doing well myself. On that Friday they took her c-section. It was a horrifying experience which I wouldn't wish on any family. It has effected my whole family including my 3 other children. I still cry for my baby who I know I will see again someday. I have learned I will never be the same person I was before June 23, 2006, I am now learning to live with who I am becoming.

Don't get me wrong, our daughter was the most beautiful little angel I have ever seen. She filled us with 2 hrs of complete love. When I say it was horrifying, I am saying that losing her was. I wish we could have had more time for love, hugs, and kisses. She has touched our lives forever and I don't regret any part of what I had to go through to get her. God gives life for a reason, and it is His to take at His will not ours. My husband and I have always said her life will never be in vain, because if we can touch another life through hers its worth it all.

Rena pmattf@yahoo.com

 

 

 

Submitted 5-8-08

 

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Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA  92649

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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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