I’ll never forget the day we learned our daughter, Dorie, was diagnosed with profound hearing loss. It was March 24, 1989. My husband suspected something was amiss but I thought he was needlessly worrying. We were devastated to learn that his fears were correct. How would she learn to talk and communicate? I grew up in a home that constantly played music. Would our baby ever hear Bizet’s Carmen? A friend shared a column reprinted by Dear Abby that comforted parents learning that their child may have a disability by drawing a metaphorical reference. “It was like planning a trip to Italy and expecting to see the gondolas in Venice and the Coliseum in Rome and then finding yourself in Holland with tulips and windmills.” We were lucky in many ways because with the advent of cochlear implants and superb auditory training, Dorie learned to listen and speak and was leading a pretty full life. Then fourteen years later, our travel plans changed again, and we learned that her hearing loss was related to a rare disease that was robbing her of sight as well, Usher Syndrome 1F. So now we were off to China to seek the Great Wall and Buddhas. This journey though, is fraught with obstacles that have been much harder to overcome. The rareness of this disease and the intricacies to treat it have proved to be very challenging. Meanwhile, with each passing day my daughter’s vision is diminishing and her world grows darker. Her plucky demeanor and confidence have been shaken as well. Like any parent, we hope to prepare our children to take on the challenges and obstacles that life may throw at them. Few of us expect our children to face those challenges without the benefit of sound or sight. So to revisit the travel analogy, how do we navigate these travels without maps or modes of transportation? Funding the promising research to find a cure for this terrible disease will help Dorie and others (and the future children who may inherit Usher 1F) to continue to see and live the promising lives they deserve. I hope we can count on your generous support.
