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2327) Kaci 
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Monday, September 17, 2007 06:35 PM Host: Write a comment

My daughter who is now almost 3 years old, was diagnosed at birth. When we got the second screen done they said it came up negative. Luckily the doctors at Dorenbecher's Hospital didn't back down. They did multiple blood tests, and sent them to multiple places. It wasn't until the very last genetic/blood test that they finally confirmed it. We have taken her to get IV's almost once a year. I am lucky, her levels have never dropped during sickness. My doctors have said they don't know how biochemistry is working into the genetic disorder yet. I was glad to read your website, because it reminds me that I need to always be aware with her. It only takes one time. I will always be praying for all these families and know that their stories are saving my baby's life.
Thank you
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