Tag Archive for: symptoms of wolfram syndrome

a group of children in the sunset with a sign that says HOPE above them.Wolfram Syndrome is a rapid aging and deterioration of the central nervous system. The damages consist of diabetes, chronic kidney failure, deafness, and blindness; it’s not anything to be ashamed of, it’s just not something worth bragging about on the first date.
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Photo of Lauren and Megan Gibilisco

Lauren and Megan Gibilisco

Last year my sister came up with a great idea for a Christmas present. It’s hard to get something for someone who is blind. She got tickets for us to go to Mannheim Steamroller.

I thought this was a great idea because I could hear the music and they were going to play some Christmas songs which I love. The morning of the event, it started to snow. By evening it was a blizzard and the event got cancelled. My sister was very sad that we had to miss the show.

After Christmas she heard that the Lion King Musical was being performed in Omaha which is where she lives. So she got tickets for us to go to that. Again, I can’t see the stage but I could enjoy the music and I would know what was going on because I had seen it many times when I still had vision. We got all dressed up and went out to dinner and then to the show. We forgot to get my handicap sticker so we had to walk several blocks and it was very cold and windy. We arrived there just before it was to start. My sister handed the tickets in and was informed that it was for the following night and I had other plans. So my sister took a friend with her the next night. She was very disappointed again that she was unable to give me my Christmas present.

This April she was given tickets to see the Cinderella Musical. It is in the theater in Omaha again. She called me up and told me that we were going to go to this since the last two events didn’t take place. This time we got there on the right night and sat down to listen to the music and singing. Cinderella was a favorite of mine. Again I couldn’t see the stage but I could hear the music and would know what was going on from what they were singing. So the lights went down and the singing started. My sister and I looked at each other….they were singing in Italian. We couldn’t understand a word they were saying. We did enjoy the music and spending time with each other. When we left the musical, my sister said “never again are we doing this.” After three times it was apparent that this just wasn’t the great Christmas present she imagined.

The next night we were watching a movie at her apartment. She turned to me and asked “Lauren, is it too dark in here for you?” I guess from the stunned look on my face she realized what she had just said to me. We rolled on the ground laughing at that one.

The moral of the story is that I have the best sister in the world.