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Kia's Song (written by her
brother) |
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"I'm almost past sad, I'm so very
happy that God picked us to treasure this gift. And although I have gone
through all those periods of grief, I would pick having her for that brief
period in time to not having her at all! When I look at the slideshow, I
see so much love and it reminds me so much of those precious 17 hours and is
very rewarding... she is so much a part of me and I can't help but share
her precious little soul!" 10-14-06 Lorie
"My
Mommy was given some hope, and a gift that she was able to love, hold and
acknowledge. She would have not been able to do all that if she had listened
to the doctors and terminated the pregnancy." (Kia) |
Saskatchewan, Canada
 Hello, My name is Kia Lien Emma~Lee. I was born on May 6, 2004 with full Trisomy
13. I lived for 17 hours and went to heaven on
May 7, 2004.
My Mommy and
Daddy knew I had Trisomy 13 when my Mommy was 24 1/2 weeks pregnant with me.
The doctor's wanted my Mommy and Daddy to terminate the pregnancy but they
decided that they wanted to get to know me and that only God would decide
what was going to be my fate. My Mommy and Daddy want other parents to know
what it was like knowing that I had Trisomy 13 and they hope to help anyone
who thinks there is no hope for their baby.
My Mommy wanted to share our experience with Trisomy 13 so that she could
help other Mommies and Daddies get through the diagnosis of Trisomy 13 with
their babies. We have lots of experience to share and it can sometimes be
scary and lonely. Doctors can be very clinical and are can be less sensitive
about the experience of Trisomy 13. My Mommy found that she received a lot
of information through other Mommies and Daddies who had experienced Trisomy
13. There are other Trisomy 13 babies and children around the world who are
still alive. The Parinatologist told my Mommy and Daddy that "death was
imminent" and that "Trisomy 13 babies do not live". My Mommy has found these
statements to be generalized and that in fact there are surviving Trisomy 13
babies and children.
My
Mommy was given some hope, and a gift that she was able to love, hold and
acknowledge. She would have not been able to do all that if she had listened
to the doctors and terminated the pregnancy.
Lorie Hamilton & Gaymond Wong
Kia Lien Emma~Lee Wong
May 6, 2004 - May 7, 2004
Saskatchewan, Canada
 
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Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
