We have been pushing for so long on "Greyson's Law" that I can hardly fathom the fact that it is happening. People that I respect and know these things tell me that the fact that we have accomplished what we have accomplished is unusual. I will have to take their word for it, because it seemed to be a up-hill battle from the beginning.
But it has only been 4 months and 3 weeks since we lost Greyson. It really seems that it has been a lifetime.
My dear friend Ron tells me constantly that we should be proud of ourselves for all that we have accomplished in such a short time. I find myself chafing under the knowledge that it will be a year before the new tests are enacted and that Krabbes Disease will not be one of the added diseases screened for. I have to force myself to be happy and to celebrate the victory. It may be a victory, but it is an incomplete one. Thousands of Infants in this country will not be tested for many diseases that they should be screened for at birth. Thousands and thousands will be permanently injured and many others will die because of the fact that the newborn screening programs in many states are so incomplete.
The anger in my soul threatens to consume me because of this, this ignorance! And that is what it is. No parent if they knew what I know would be okay with the state of affairs in this country and that number of infants misdiagnosed because of the lack of newborn screening.
This is a health crises of ignorance and the need for education and study is critical.
But for the moment, I will stop, and take a breath again....We did it Grey! Because of you we made things better for babies in Texas!
No comments:
Post a Comment