My name is Julie McCawley, I’m 12 years old. I had Stevens Johnson Syndrome when I was 11 months old. I don’t really remember having SJS. I do remember all the things I have been through since. I’ve had lots of doctors appointments for my eyes and ears. I hate the ear appointments the most they hurt really bad. I have had a lot of eye surgeries too. I know that SJS has changed my life. I had two great big blue eyes one wasn’t even foggy looking at all. I know because I have seen pictures of myself before I got sick. I can’t see out of my right eye and I have a lot of scarring. The light hurts my eyes so most of the time I wear sunglasses and a hat inside and out. I have to carry eye drops with me all the time and sometimes I forget they are in my pocket and they go through the washing machine. I have had a hard time in school. Last year they tried to make me move to a school for the blind. It was really far away and I cried about that a lot. My Mom had a lot of meetings with the school and the school district and I got to stay where I am. I didn’t want to leave my friends and family. I would have had to live at the school and come home on the weekends. It has been hard for me to make friends. Kids have always made fun of me but now I have some friends that stick up for me. Since my Mom runs the SJS Foundation I have been really lucky to meet a lot of people that have SJS. They can relate to me and I can relate to them. I met my first SJS friend when I was 18 months old. Her name is Danica and she was 7 years old. I still know her today. When I was four I went to Boston and met my friend Stephanie from New Jersey. She was 3 and we became really good friends immediately. I also met Joe Zienowicz. I remember he took us to a seafood Restaurant and I had fish sticks and he had lobster. He was really funny and he had a cool car and it had a built in dog cage in the back because he has dogs but I never got to meet them. I have been really lucky to meet a lot of SJS friends. I went to the hospital to see Arianna when she came to Denver for some tests. She was really nice to me and my sister and we like her a lot! If I never had SJS I wouldn’t have gone to Boston I wouldn’t have met so many people. I guess there are good things about it too. I have learned a lot about it and I have helped give out SJS Fact Sheets and I also walked In the first SJS 5K walk. My grown up friends are Penn Street and Amit Khatri. I have a friend named Joe in Ohio. He emails me and we are pen pals. His uncle passed away from SJS. I can’t say I like SJS because it is not a fun thing. I know that lots of people have died from it. I am glad to be here with my family. I know that I almost died and God had a reason for me to be here so I know I am a lucky person. I love my little sister Kerry. She is 5 years old and she has type 1 diabetes. Kerry has had to have shots every day since she was 21 months old. If I could wish anything in this world it would be for my little sister to be cured of diabetes. When I grow up I would like to be a veterinarian. I love dogs and cats. I have 2 dogs Molly and Chloe and 3 cats, Snowball, Simba, and Ali. Every night my sister and I pray for everyone that has had SJS to get better.

Love, Julie