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Grant’s Story

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It’s hard for me think about what our life would be like without newborn screening.

Grant Pompe Disease

Our son, Grant was born on February 18, 2021. He was the first baby in Indiana to be picked up on newborn screening in Indiana with Infantile Onset Pompe disease. We will be forever grateful for newborn screening. His life would look a lot different had he not been diagnosed from newborn screening. Pompe was added to Indiana’s newborn screening in July of 2020. Thanks to newborn screening and early treatment of Pompe with ERT our son is thriving! If you met him you wouldn’t know he had Pompe Disease unless I told you. It’s hard for me think about what our life would be like without newborn screening.