The Genetic Journey

My family has give generations of deaf and hard of hearing members in the family tree. All of my mother's siblings were deaf and hard of hearing as well as my mom. I am deaf, and my two brothers and two sisters all have varying levels of hearing loss. Every one of us was born with normal hearing. We each became deaf and hard of hearing in different ways-- some from illness and some from falls or head trauma.

My husband and I also have three deaf and hard of hearing kids. My niece is hard of hearing. Two of my cousins are hard of hearing and some of their children are just beginning to show signs of losing their hearing.

So it was pretty obvious that a gene was at play here. The question was, what gene? We sent our family's blood work in to Gallaudet University's Genetic Studies department for analysis. None of the commonly known syndromes or genes were identified in our family. Via the internet, we connected with researchers from the National Institute of Health. They offered to fly some of their researchers to our home to study our family and take more blood.

Sure, why not, we said. After all, it wouldn't cost us anything out of our pocket. The researchers flew in and asked questions all day long. Before they left, my mom and sister helped to cook a large dinner. My mom never lets anyone leave with an empty stomach.

To read more about the results of the research and the impact of knowing the genetic pattern, read on: The Genetic Puzzle.