Hello. It was nice coming upon your web site. I myself have Ushers and so does my sister. I was born with hearing loss.
I remember being fitted with hearing aids. I used to say to myself that I am blessed to have my eyes. Little did I know why I was going to Children’s Hospital of Boston. I never could understand why they were looking at my eyes also. I would say, “I am hear for my ears.” (lol.) By age 6, I started having trouble seeing at nighttime. By the time I was in my late 20’s to early 30’s, I started to lose some of my field vision. I could no longer play sports. I couldn’t see up close. I was using my central vision and peripheral. I had to move my eyes back and forth, sort of like scanning, and then used my thought process to fill in the missing blind spots. Of course, this is very stressful and takes a lot of energy from me. I am constantly bumping into co workers all the time. They now stop walking completely when I am approaching nearby. They get my attention by saying “Hi Mark” so I am able to spot their location and slowly maneuver around them.
I am 49 years young and I have been waiting all my life to be helped or cured. I tell people that I am not handicapped, I am challenged. My beautiful wife and I just had a baby girl 13 months ago. I WANT TO SEE and HEAR HER GROW UP. I hope my story helps others realize how hard it is for people like us with Usher syndrome and that my message reaches others who can help our cause. I don’t want to give up hope.
Karen Babineaux says:
February 9, 2013 at 4:00 amAwesome story, Mark. U mentioned that you had hearing aids and nothing about c.i.
If you are still wearing hearing aids, then you must not have a profound loss? Or have you had a c.i and if so, at what age. Sorry about all the questions. Just curious. Obviously you hear your co-workers say “Hi, Mark” Thanks! and God bless!
February 26, 2014 at 7:11 am
Hi Mark, thank you for your beautiful story. As a mom of a son who was recently diagnosed or ‘suspected’ at age 6 there is nothing more reassuring to know that one can lead a normal life with Ushers. I want to see my son get married and have kids and I am CERTAIN that soon enough you will be able to see your dear daughter grow up.
PS. Which type of Ushers do you have? My son is 6 and has minor changes in the retina but was born with severe hearing loss and wears CI