I’m grateful for the work of Jennifer Puck and her colleges who developed this life saving test.  Here is a paper written by Dr. Puck in 2007 as she was helping us organize for implementation of SCID screening.    

Members of IDF have been conducting a newborn screening campaign and put together some insightful information including a map that shows where in the United States the test is currently conducted.  It’s thrilling to see it being adopted and I’m anxious to see the day when Virginia joins the group.  I’d also like to thank Barb Ballard who has done so much to advance this through the process in Virginia.

To convey an idea about the number of families this test will help… Routes’ 2009 paper documents results of screening 71,000 infants in Wisconsin where 17 tests came back positive. 

This wonderful test saves lives and money.  My daughter was diagnosed with ADA-SCID nine years ago after being sent to the hospital with infections on multiple occasions, the last time for about two weeks, before we had the good fortune of meeting Dr. James Clayton at Inova Fairfax Hospital who made the correct diagnosis.  We then spent many weeks in a very expensive isolation room at Children’s National nursing her back to health under the care of Dr. Naynesh Kamani.  It was a terrifying and costly experience that ended well for us and can now be largely avoided by other families in Virginia after this test is put into practice.

A couple years ago I met a family who lost a baby to SCID where this test was not used.  On the same day I met a bundle of joy who was one of the first babies identified by this test and treated before getting sick. 

Let’s get this done Virginia!

The following are links I attempted to include in my previous comment.