Just saw a commercial in which Alyssa Milano is advocating for children. The commercial states No parent should have to watch their child die which struck me because, as parents of a child with Krabbe Leukodystrophy, that is exactly what we are forced to do. A simple blood test could change all of that! These children do not have to die. Life saving treatment IS available, but is only effective if administered before a child is symptomatic -- which is why early detection through newborn screening for Krabbe and similar diseases is crucial in giving all children a fair chance at life! Lilys Law will increase the number of diseases Marylands babies are screened for at birth by adding six additional disorders to the MD newborn screening panel including Krabbe Disease and other lysosomal storage disorders - Fabry, Gaucher, Pompe, Niemann-Pick A/B and Hurler Syndrome. Please contact your legislators and tell them that Marylands children deserve and ! Ask them to ensure that Lilys Law HB 891/SB 433 is passed this year! Because no parent should have to watch their child die. #lilyslaw #newbornscreening
Posted on: Sat, 01 Mar 2014 19:26:17 +0000
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