A Seeing Eye, a Listening Ear: In Honor of Usher Syndrome Awareness Day

The beloved children’s television host Mister Rogers once said,

“The gifts we treasure most over the years are often small and simple. In easy times and tough times, what seems to matter most is the way we show those nearest us that we’ve been listening to their needs, to their joys, and to their challenges.”

Indeed, the essence of life seems always to come down to the small and simple things, to the things we often don’t think about, the things we take for granted, the things we forget are gifted to us as human beings: our ability to see and hear, taste and smell, walk and breathe.

I am gently reminded of such gifts each time I play hide-and-seek with my three-year-old niece, Emma, who was diagnosed with Usher Syndrome (type 2A) – the most common genetic cause of combined deafness and blindness – two years ago. Hiding together while her older sister counts to ten, she mimics my “shhh”, only to let out a squeal, revealing our location and screaming in delight at the sight of her sister. Equally delighted by the sound of music, Emma is a natural entertainer, grabbing her microphone and eliciting howls of laughter with her wild dance moves. How precious the gifts of sight and sound truly are. Read more