When I think of Emma, my 1-year-old niece and goddaughter, I think of her big, bright blue, angelic eyes. They are staring up at me, at seven months old, trusting, innocent eyes that eventually succumb to the spellbinding power of sleep in the arms of someone she had not yet come to know.
I remember thinking how miraculous it was that, at such a young age, babies could not only convey a feeling, thought or emotion with one simple look, but could gaze so deeply, so intently, as if, for a moment, they were imparting years of life wisdom that we typically only acquire with age.
It was her eyes in this moment that flashed through my mind as I learned three months later that her hearing loss would not be the only challenge that she would come to face. That what had once seemed like an unlikely possibility had revealed itself as a new reality when the test results diagnosed her with Usher Syndrome – the most common cause of combined deafness and blindness that affects about four babies in every 100,000 births. An inherited disease, it is thought to be responsible for about three to six percent of all childhood deafness and about 50 percent of deaf-blindness in adults. Read more