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Miesha & Tilyn | TUBB4A Leukodystrophy Advocates on Instagram: "Nothing prepares you for how fast your world can change when your child’s body stops doing things it’s supposed to do naturally. Decisions come fast, emotions come faster, and fear is always loud at first. A feeding tube wasn’t something I ever imagined for my child. It felt overwhelming, final, and heavy. But what I’ve learned is that medical tools aren’t giving up—they’re giving your child a chance to feel better, grow, and live w
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Quick answer- her body went from small spots of pneumonia to only one of her lungs having maybe 25% function. Her seizures were so frequent and almost impossible to control. Leukodystrophys cause the body to not function like a healthy body. Her muscles, organs, and brain couldn’t recover or heal. #leukodystrophy #leukodystrophyawareness #tbcd #tbcdawareness
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