This precious newborn was the soul we had longed to meet. After 3 wonderful boys, a daughter was a gift beyond compare. We named her, in English, Eliana Rachael. In Hebrew, Chana (Hannah) Rachael. Our boys immediately nicknamed her ?Rachaeli?. They showered their baby sister with stuffed toys, sweet kisses, and an abundance of silly songs. Each developed their own special relationship with their sister; each found their own way to make her smile.

But by 3 months of age, Rachaeli was not rolling over, as most children do. At 6 months, her body seemed floppy?unable to sit; not trying to crawl. At 9 months, our pediatrician grew more concerned, as her developmental delays became increasingly significant. Referred to a pediatric neurologist, we were told that this was likely Benign Congenital Hypotonia, a relatively mild condition of low motor tone. Seeing Rachaeli smile and interact warmly, he reassured us that she would likely grow out of these delays. We prayed this was the case.

We began Physical, Occupational, and Speech Therapies at 10 months of age, hoping to accelerate her developmental gains. By this point, Rachaeli’s babbling seemed to diminish. The only identifiable word she used was “Abba” (daddy, in Hebrew). She said it just once; we would not hear that word again. Her muscles seemed weaker; her startle response remained exaggerated. We didn’t understand how these pieces fit together. We grew increasingly frightened, coping differently with feared outcomes neither of us felt prepared to consider.

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