Personal Stories: Roni

Meeting Roni (told by her mentor, Donna): As soon as I arrived at the high school for the deaf, a teacher introduced me to Roni, who is 17 years old. Her first question to me was, “Do you have a problem with your vision?” I answered that I did. Roni was happy to see that I was young – I’m 28. She had been sure I would be much older than she was and unable to relate to her. We started getting acquainted and Roni told me about school and about her family. She asked a lot of questions about Usher Syndrome, and I could tell she was very anxious and needed a lot of information. She had been told just two months before that she had Usher syndrome, and she couldn’t believe this was happening to her. She was tested because her cousin, who was pregnant, was found to be a carrier and recommended to Roni’s mother that she be tested, too. I answered all of Roni’s questions. She told me that she hadn’t been sleeping well since she discovered she had the syndrome. She was also sad that her boyfriend was slowly distancing himself from her since she had told him – mistakenly – that she would be completely blind by the time she was 20. Roni was very relieved to find out that I also have Usher Syndrome and that she didn’t have to cope with her feelings alone. I told her that in spite of everything, I’ve continued my life – volunteering for the army, receiving my B.A., getting married and having children. And she began to understand that she, too, will be able to do whatever she wants. Roni is a good student and I know she is motivated to succeed. She asked that we meet again and we arranged that at the next meeting, I would visit her home and meet her mother, who was devastated by the diagnosis. I told her that my mother had had a similar reaction. I think it will help Roni a lot to continue meeting with me over the coming months.