Fifteen years ago, I noticed something different about my two-year-old daughter, Sammy’s walk. She had a noticeable sway in her hips, a little diva move that seemed more cute than concerning. But when she struggled to keep up in gymnastics and dance, we took her to a physical therapist. After months of sessions, the therapist made a quiet suggestion that changed everything: “It would be nice to have a diagnosis.”
That comment launched a journey no parent imagines. After undergoing genetic testing, only possible because we enrolled in a study at the National Institutes of Health, Sammy was diagnosed with Limb Girdle Muscular Dystrophy Type 2I/R9, an ultra-rare muscle-wasting disease.
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