I am a 15-year-old boy from Shanghai, China. Like other boys I like to play tennis and basketball, but there was one thing made me different. It began on September 31, 2012. On that day, I felt numbness on both of my legs. I also felt pain in my stomach and back. By October 3, I couldn’t even walk, so we went to the hospital immediately. The doctor told us to take some tests. On the second day, my family and I received my diagnosis called Transverse Myelitis, and we were frightened because we had no idea what this was! Then the doctors gave me intravenous steroids and IVIG (intravenous immunogloblin), but I had no improvements. At that time, I was afraid I would never have any recovery. Fortunately, I did recover some feeling in my bladder, bowel and legs.
After I got TM, my mother always searched for the latest information about it. Through the Internet, she thought going to America would be a good chance to find the latest information about TM. While we were preparing for this trip, my mother found there was a TMA camp. We applied for it because I thought it could be attractive. It was true, I liked it so much.
First, I liked the camp because it was fun. Before I went to the camp, I was nervous because I was not good at speaking English, so maybe I wouldn’t be able to talk to other people. But I was wrong. The first day, a volunteer explained all the activities in the camp for me and accompanied me while I played in arts & crafts, woodshop and roasting marshmallow after dinner, that helped me not to feel nervous anymore. During the next three days, I did some really interesting activities in the gym, arcade and bakery, also some outdoor activities like fishing, archery and Cubby Hunt. There was a unique activity every night, the first night held messy games, the second night was a movie night and the third night was a carnival including some fun games, a beautiful fireworks display and a memorable closing ceremony. When I was in these activities, I felt like a normal person because everyone in the camp treated me as a normal person, everyone was so friendly and patient. I didn’t have to worry about someone staring at me or somebody talking behind my back. Every volunteer and member was there to help immediately if I needed any help. It was excellent!
Another reason I liked this camp was its medical help. There were some doctors attending the camp. We had discussions with three of them (our roommates interpreted for us and it was heartwarming). After they reviewed the information I gave them, they gave me some positive advice and it made me confident in my rehabilitation. The camp also held educational sessions for parents every afternoon. The session taught parents how to overcome the difficulties from psychological to physiological which will happen to children or is happening to children. My parents learned a lot of useful information for me.
Besides the opportunities for parents, the camp provided the chances and activities for children to gain some powerful information too. We met the paralympic gold medalist Anjali one of these afternoons. She told us about her inspirational story with TM and told us how to live with this disorder, it was incredible! On one of the nights, a camp staff met the teenagers who had TM and gave us an opportunity to talk between ourselves. We talked about the questions such as ”what will you say if your friends ask about your sickness?” We had a leisurely discussion and a good night. Most helpful, I bought a book 5k, Ballet,And a Spinal Cord Injury written by two girls who had TM before and have nearly recovered. The book is the story about how they got TM and how they beat it. So I knew one more story about TM, and it gave me confidence again.
And last, I would like to thank all the people who donated to the TMA, organized the camp and attended the camp. It was worth being at the camp and my parents and I are very grateful. I’m looking forward to the next chance to attend camp.
~ Xiaoyang Wan (Oscar)