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Eight years ago my husband and I were blessed with a beautiful baby girl
who was, almost immediately, diagnosed with BWS. She had a large, protruding
tongue and hypoglycemia. We saw a geneticist and doctors who of course
did not know much about the syndrome at that time. I spent many hours in
the local university library, which happened to be one of the finest medical
school's in the south, and read every piece of literature I could get my
hands on. It was at that time, we realized how lucky Chayni was to have
only two of the many symptoms which are associated with BWS. At the age
of 1 1/2, we had Chayni's tongue surgically reduced since she was unable
to eat any table foods at all. And for fear she would end up choking on
something, we sought help. Through the years, Chayni has gone through years
of speech therapy, cognitive development and I don't know how many renal
ultrasounds. But you know what? She has developed into a strong, independent
young lady who has faced every challenge with a smile on her face. Today,
her hypoglycemia is under control and I monitor her diet. She has some
learning disabilities (comprehension, mostly), but she is in the second
grade holding her own. I hope that our story will help just one family
realize that there will be struggles ahead (probably for years), but it
is all worth it when you realize what a wonderful child God blessed you
with.
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this page last modified: Tuesday March 27, 2007