HeyJaredThat Medical Mom
Hi there! I'm Emily. I'm a mom to an impossibly cute two-year-old who has an impossibly cruel terminal disease (Leigh Syndrome). Finding joy through long walks, cooking, dark humor, skiing, and creating sweet memories with my family.
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- Sep 13, 2026
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- Sep 13, 2026
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Awareness Week When You’re Already Aware (opens the original)
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For most of my life, I had no idea a disease like Leigh syndrome existed. Then Jack was diagnosed, and suddenly it became woven into every part of our lives. It’s a strange perspective to bring into an awareness week: remembering so clearly what it was like not to be aware.In 2026, awareness is definitely not something I’m lacking.I’m aware of Leigh syndrome in the longing to have a conversation with my son. In washing more syringes than I ever imagined one person could own, let alone use in a d
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