Here is the FOX 26 Houston story by Kristine Galvan. There is one hiccup. Unfortunately, Krabbes Disease is not included in the 47 disorders HB 1795/SB 1720 will screen for. It will not be added until it's status with the ACMG (American College Of Medical Genetic) changes from "nominated" to "recommended", hence the need for a Newborn Screening Advisory Panel.
About Me
- Nicole
- I am the mom of 4 boys. My youngest, Greyson, was diagnosed with Krabbes Disease. He left his broken body behind on 12/12/08, just six days shy of his 1st birthday. I am a Special Education teacher. My husband is a pediatric nurse. We have been married for 16 years. Together, with the help of many, we have used Grey's life and loss to try to expand Texas' newborn screening program. HB 1795 was signed by Governor Rick Perry on 6/19/09, establishing Greyson's Law. However, it lost it's funding before even one baby was screened. We have established Grey's Gift Memorial Foundation to teach other of the importance of newborn screening.
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