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Excelsior Springs, Missouri (MO) - Misdiagnosed Trisomy 13
March 15, 2008Quick update as of March 2008 Alicias genetic testing came
back that she does not have Trisomy 13 .The doctors are going to be doing
more testing . and I will keep everyone informed.
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9-23-07
| "I couldn't imagine
life without her now ! I was also told she would never walk, sit up,
crawl, or talk. Now she is walking running and just plain getting
into everything, I wouldn't have it any other way."

Mom with Allie |
My daughter's name is Alicia and she is a happy and healthy 9 and a 1/2
year old. Allie (her nickname) was a full term baby and we had no idea that
there was anything wrong with her, I refused an amniocentesis. There were no
problems with my pregnancy even though I was considered high risk due to
cervical cancer when i was 18.
When she was born Allie was diagnosed with microcephaly, and choanal
stenosis. I had to feed her out of a bottle that looked like a spoon because
she couldn't breathe out of her nose. She also came home with an apnea
monitor.
For the first 3 and a 1/2 months we were in and out of the hospital several
times. At 3 and a 1/2 months old Allie had a seizure and was hospitalized,
this was when I found out about her diabetes insipidus, aspiration and
reflux, asthma, holoprosencephaly and the death sentence of trisomy13. We
were told at this time that Allie wouldn't live to her first birthday. Well
we have made it past that and then some, thank God.
I couldn't imagine life without her now ! I was also told she would never
walk, sit up, crawl, or talk. Now she is walking running and just plain
getting into everything, I wouldn't have it any other way. Allie is even
starting to talk . She says momma, Bobbie (her older sister) and I love you.
isn't that great! I thank God for every day I have with her. Her older
sister Bobbie, even helps with her tube feedings and has fun doing it.
Marilyn Gartner
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Bobbie with her little sister, Allie |
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