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Sofia’s Story – Johns Hopkin’s
On the morning of Friday, Aug. 23, 2019, a newborn lies in her father’s lap at Johns Hopkins Home Care Group in Dundalk, Maryland. Her curious eyes peer up at the sea of rainbow scrubs and the wide smiles of nurses and staff around her. “Sofia, Sofia,” they say, wanting her attention as an infusion technician at her side pushes a blue button on a panel, releasing a revolutionary new therapy intravenously through a vessel in her arm and triggering applause.
Sofia’s face remains pink and animated, but her arms beneath a turquoise blanket are stone still at her side, her legs seemingly lifeless, signs of the neuromuscular disease that began afflicting her before birth.
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