Above is an article about the CHIPs amendment.
I think what is most irritating is that nobody has even questioned what will happen to Greyson's Law because of these games.
If you have been following, you will notice that I have removed yesterday's post. I do not want to draw conclusions or make assumptions that I am not 100% sure of.
I have been told that Sen. Uresti has taken HB 1795 back to the Senate. I have also been told that he is completely committed to making sure that Greyson's Law goes through. I'm not sure what his plan of action is, but my heart tells me to trust him. I have no other choice.
3 comments:
You have made it through so much and not given up. What can we do now to help?
I came across your blog yesterday after receiving a message on facebook about what was going on with Greyson's Law. I've read your blog from beginning to end and I can't tell you how much you inspire me. My daughter Kaitlin has a fatty acid oxidation disorder called carnitine uptake defect that was diagnosed after her newborn screening came back abnormal. CUD is one of the disorders that wasn't tested for when my oldest daughter was born and we are so lucky that she is unaffected. You are the perfect advocate for the expansion of the newborn screening panel especially since you've been on both sides of fence. Thank you so much for what you are doing and I am so sorry for your loss.
Just a setback - I hope. Let us know who we need to call!
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