Parenting a child with Duchenne carries a responsibility that goes far beyond the usual roles of motherhood or fatherhood. It means becoming a protector, advocate, decision-maker, and steady presence in the face of uncertainty. Our responsibility is not just to extend life where possible, but to protect quality of life. To ensure our child is cared for with dignity, spoken to with respect, and surrounded by love - always. This is not something you clock in and out of. It’s a sacred responsibilit
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