March 19, 2009 at 7:01 PM ET
Rebecca and Peter Alexander
This is the most important story I've ever told. It's also the toughest. My sister, Rebecca, is smart, kind and hysterically funny -- truly, the most remarkable and impressive woman I've ever met. She works as a practicing psychotherapist and to make ends meet she teaches 15 spin classes a week. She does all of it despite a disability that's robbing her of her vision and her hearing all at once.
Stop for a second -- think about that! Doctors have told my sister she will likely go completely blind and deaf within the next 10 years. As my sister describes it, "It's like I am slowly being taken from the world around me -- like the end of an old Warner Brothers cartoon on TV where the picture becomes an increasingly smaller hole until it finally fades to black."
Rebecca, 30, has a rare genetic disorder called Usher syndrome, type III. It is among the cruelest of disorders -- progressively stealing normal life away from roughly 16,000 people nationwide. And, currently, there is no treatment or cure. Rebecca lives courageously each day with the hope that a cure will be found before it's too late. My family and many others are determined to help through our involvement with the following organizations.
An extraordinary research effort is already under way through the "Usher III Initiative" at Hope for Vision where a dedicated team of scientists is focused on Rebecca's specific disorder. I recently spoke with Dr. David Saperstein, Scientific Director of the Usher III Initiative, who says their researchers are working on a multifaceted approach to slow or halt the disease's progression, including the development of a targeted drug and gene therapy.
In addition, the Foundation Fighting Blindness funds research on a broad spectrum of retinal degenerative diseases, including Usher syndrome, and was involved in the important early work that helped characterize the gene that causes Usher syndrome, type III.
I asked my sister to share some personal stories about her experience living with Usher syndrome, type III -- her fears and the challenges she faces:
I have the same hopes and dreams as any fully-sighted and hearing person and my dreams haven't faded with the progressive loss of my vision and hearing, but my disability has made me more driven and eager to take on each day. When I began to lose my hearing, I learned sign language and have found a sense of belonging among the Deaf and hard of hearing community. When I started coming to terms with the idea of going blind, I sought out a mobility specialist to teach me how to use a cane so when the time came that I needed it, I'd be ready. I don’t have time to sit around and think of all of the possible things that could happen to me. I simply don’t have time.
I have always insisted on living my life independently. So, it's been a challenge to ask for help from others. However, as my vision and hearing have continued to decline, I have become more comfortable asking for help. In fact, it's felt very liberating. It has allowed me to really connect with others and has enabled others to become more comfortable and open with me about their own lives. I'm incredibly lucky to have a wonderful, loving family and very loyal, close friends. The more I have come to accept myself and face my own challenges, the stronger my relationships with others have become. What I have learned is that we cannot live life on our own. We all need each other for support in so many different ways.
Sadly, many of my biggest fears already have been realized. I’ve been rejected by people I’ve dated when they found out about my disabilities. I’ve been left alone in a really loud and very dark bar by people who didn’t understand that I needed them to stay by my side. I’ve even been hit by a cab. You name it; it’s likely happened to me! But I can’t stop living my life because of the obstacles I face each day. My disabilities have made me passionate and energized to live my life to the fullest.