I had a great week. I just returned from the Wolfram Clinic in St. Louis. This is my 5th year going to the clinic. I am going to tell you the difficulties I had of hearing and seeing.
The first night we had orientation. We were to go to different stations to sign papers and collect supplies. I sat at Dr. Urano’s table and chatted for a while. After we left I said to my mom “does he have an accent and where is he from? “My mom told me he was Japanese. This is the 5th year of seeing him and I never knew he was Japanese. We had a good laugh over that. It is very difficult to have someone come up to you that you can’t see and can hardly hear. As we went from table to table I greeted the doctors with “long time no see.” I wanted to see how many of them would catch it.
In my appointment with the audiologist I had to listen for beeps, repeat words and sentences. My first sentence was “the cat is sitting on the bed.” I repeated “the cat is shitting on the bed.” I asked her if that sentence was what she said. She could hardly answer me because she was laughing so hard. She said I gave her the laugh for the day.
One day we took the trolley to go explore Forest Park. It was very difficult getting up into the trolley. There were two steep steps I had to go up and making sure I didn’t fall off the curb. I made it onto the trolley and had to get to my seat. Again I had to step up to get there. I grabbed for the seat in front of me but instead I grabbed the hair of the lady in front of me. I was mortified and apologized to the lady and my mom did also. She said “she was fine.” We all had a good laugh over that.
I realized how the information that the doctors get from us will one day lead to a cure. Dr. Urano is creating new eye cells right now that may greatly help or reverse eyesight. The clinics are great. It is so nice seeing all the people there each year. We feel like a family. But all the testing and blood samples may one day help stop or cure Wolfram Syndrome. I for one am so happy to be a part of this and to be a part of the cure. What better way to help others out.