I sat down at my computer this afternoon and did my emails to the members of the subcommittee for Health and Human services. While I was writing and pasting the emails to each of the members, It hit me! Grey still hasn't been gone but 2 Months, 2 weeks, 2 days and we are already moving a House Bill through the Texas Legislature.
Now granted, I am very pleased and thankful that we have met with the success that we have so far, but I am careful not to forget that this is only a small step toward our ultimate goal. After all this bill is only going to put the Texas Newborn Screening program where it should have been after another H.B. 790 that was passed in the 2005 secession. Unfortunately the framers of that bill left crippling loop-holes in the language that allowed lawmakers to delay en action and ultimately kill it's intent. Nicole and I have been insistent that the language in Grey's Bill # 1795 be very specific and clear. Not leaving any question as to when and how the expansion of Newborn Screening will happen.
So the good news is that we will be adding all of the screenable diseases to the panel except for Cystic Fibrosis, Galactose epimerase and Galactokinase. The reason that these three diseases have to be left out right now is, literally cost. They are screened for using other more expense, labor intensive methods than the 20 that Grey's bill adds. This is unfortunate, but after weighing the options of being able to bring Texas up from 27 tested diseases to 47. We and the sponsors of the bill decided that these exceptions could be tolerated. Especially since we have made a provision for creation of an Advisory Council to advise and act upon any future recommendations of the ACMG (American College of Medical Genetics. So we can later add those 3 diseases and hopefully Krabbes and 2 other Lysosomal Storage Disorders that the ACMG is expected to recommend for addition to the panel at the end of March. (They are currently nominated).
So amazing isn't it? Nicole and I set out to make sure that no other family has to suffer the loss of their baby from Krabbes Disease and SURPRISE! Grey's Gift! We are making it better of countless more families for 20 other diseases, some of which are more common that Krabbes. Many of them are controlled or treated with simple diet modification!
As usual I am completely humbled by the fact that Grey's short life and tragic death are going to have the far reaching affects of the potential health of countless infants.
How, how can I justify my petty, selfish grief and self pity in the face of such ordained purpose?
FIRST TEXAS AND THEN A NATIONAL UNIVERSAL NEWBORN SCREENING PROGRAM!!
I Love You Grey Grey!