Chayni
 

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.
 

Kelli

 

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this page last modified: Tuesday March 27, 2007