NEW YORK CITY, N.Y. - Former KHQ reporter and current Today Show correspondent Peter Alexander is sharing the story of his sister Rebecca who has spent her life coping with a rare genetic disorder called Usher sybdrome, type III. It's an incredibly difficult disorder in which people who suffer from it progressively lose the ability to see and hear. Nationwide some 16,000 people are afflicted by Usher syndrome, type III and there is no treatment or cure. Friday morning on the Today Show Peter will share his sister's story in an effort to spread the word about this tragic disorder and Rebecca will be interviewed live by Today's Meredith Viera.
As Rebecca Alexander has said, "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." Peter calls his effort to tell his sister's story the most important work he's ever done along with the work that his family and others are doing to find a way to slow or halt the progression of the disorder.
Peter says that Rebecca lives each day courageously but even she's afraid of the future saying in a taped interview for the Today Show, "The fear is that its so out of your control." What follows is an excerpt from a message from Rebecca posted on the Today Show website:
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.
Peter says he's determined to help find a cure for Usher syndrome in order to help his sister and others dealing with the disorder. He says that promising research is underway through the work of the Hope For Vision organization. Their Usher III Initiative program is specifically developed to bring together prestigious researchers from around the world to study the Usher IIIa disease. In addition the Foundation for Fighting Blindness is funding research on a broad spectrum of retinal degenerative diseases that includes Usher syndrome, type III.
Friday morning on the Today Show Peter will share his sister's story and Rebecca will be interviewed live by Today's Meredith Viera in an effort to spread the word about this tragic disorder. Here are some of the comment's already being shared about Rebecca & Peter's story:
You are an inspiration to us all even the sighted and the hearing. We all tend to take things for granted but I believe your disabilities will bring out the best in people you encounter because of the way you are chosing to deal with them. People will see your determination and passion! God bless you! - Loni, Chicago IL
I have Usher's just like Rebecca. I climbed Mount Kilimanjaro and summitted in 2007 to enjoy the greatest visual and hearing experiences that one can have NOW! Rebecca is living proof that Life Without Limits is possible and building a community around you that is based on love and sharing yourself with others is the only way to find true happiness in life. Thanks for sharing your journey with the world and being my friend Rebecca! - Bill Barkeley, Grand Rapids MI