It cant happen to me. Thats how I felt. I still had genetic screening (JUF still does not screen for the specific GALT deletion that 1 in 120 Ashkenazi Jews carry and Rylan had) and constant testing during pregnancy. I had a very healthy pregnancy; nauseous and sick the first 14 week, feeling great week 14 - 30, and then big and uncomfortable and a little like a punch bag my final weeks. I gave birth to what the Drs believed was a very healthy full term baby at one of the best hospitals in the country. But for 7 days we didnt know we were poisoning my son. Thats because Rylan had a rare genetic disease called Galactosemia that only the newborn screening can detect. This test screens for over 30 diseases that saves babies lives. Lets use Rylans short but powerful life as motivation to save other babies by giving 1 minute of our time to them. Please call your senator and ask him/her to support swift final passage of H.R. 1261 (Newborn screening Saves Lives Reauthorization.) Thats all you have to say when you call. If you are in Illinois call Dick Durbin 202-224-2152 and Mark Kirk 202-224-4854. Here is a link to the senators in other states senate.gov/general/contact_information/senators_cfm.cfm. It can happen but it doesnt have to have a tragic ending.
Posted on: Tue, 09 Sep 2014 15:44:31 +0000
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