Despite extensive genetic testing, including Whole Genome Exome Sequencing, researchers were never able to find the gene that caused Sophias Batten Disease diagnosis. So, while we cannot test for Batten Disease with Layla, we have ordered a Supplemental Newborn Screening test kit that will test for over 60 diseases including Krabbe Disease, Fabry, Gaucher, Pompe, Hurler Syndrome and Niemann-Pick A/B. The supplemental test is only $100 but could be a life saving measure for our coming daughter. Through this journey with Sophia, we have learned about so many diseases that we never would have known even existed and we have come to love all the beautiful children that have taught us so much through their battles. If any of you reading this are pregnant, know someone who is pregnant, or want to donate a kit to the Hunters Hope Foundation to present to another expecting family, please visit the below link to place an order. We NEVER think it will happen to us but it does happen. It happens more than we realize, more than we want to allow ourselves to believe.
Posted on: Fri, 02 Jan 2015 01:58:48 +0000
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