I am so thankful to the Boston Foundation for Sight (BFS) for holding the very first SJS Kids Week July 2010. It was awesome. In March my mom received a call from Helen Milne telling her BFS was arranging a week for kids that suffered dry eye syndrome and ocular corneal damage from Stevens Johnson Syndrome. She urged my mother to bring me there and, with Helen’s help, my mom and little sister Kerry and I traveled to Boston. Helen you are an ANGEL and literal lifesaver and I can’t thank you enough! We arrived on July 18th, a week early, because I was going to be fitted for the latest and greatest devices called PROSE (prosthetic replacement of the ocular surface ecosystem)!
The devices have changed my life. From the second the amazing Dr. Lynette Johns inserted them in my eyes! Dr. Lynette will put you at ease and make you laugh! She is down to earth and fun and it’s like no other doctors visit you will ever experience. Did I say fun at the doctors? YES it was awesome! I didn’t realize what it felt like to not have pain in my eyes. You see I have been in pain my entire life but I guess I was used to it thinking well this is just how everyone must feel. Once the devices were in I was in Heaven. I can walk in a room filled with light and hold my head up! This is a huge difference from what I’ve been used to. Since I was a baby we have lived in the dark with the blinds and curtains closed. Most mornings I had breakfast with the lights off and my sunglasses on. But no more! As soon as I open my eyes, I reach for my devices. I accidently dropped one in my room when we came home and I panicked. I would never give up my devices!
When I was 9, I had the device only in my left eye. I couldn’t wear one in my right because I couldn’t get my eye open anymore. The light sensitivity was horrible. I didn’t wear the device in my left eye for very long because I had so much trouble putting them in at school and I was just not mature enough to wear them. They were thicker then and bigger. I never thought I would have them again but in the past 2 years, I underwent 5 surgeries the latest in May of 2010 to prepare myself for one day being able to be fitted for devices again. And here I am, devices in both eyes! The PROSE devices are so different now. They’re much lighter and even smaller.
We had support group meetings during SJS Kids Week and one day all the teenage girls had our nails done at a salon. Being with other girls like me was awesome. Stephanie, Karyl, Nay, Kayla, and Maria and I talked about things that all teenage girls do, but we all had one thing in common. We are SJS survivors and VIP’s! (Visually Impaired People!) Beth and Tara from BFS were super camp counselors for us LOL! You guys were fantastic. They also led meetings with our SJS parents. I heard from my mom that it was the most therapeutic time she has ever spent. They were able to share their feelings of worry and concern for their children dealing with all that SJS brings with it. Many of them have talked by phone or email but had never met. They are now BFF’S!
From the barbeque to making murals to visiting the Boston Museum of Science, there was never a dull moment. The employees and their families from the Boston Foundation for Sight shared in this wonderful week they had so lovingly put together for us. James you are terrific! Heidi you have tremendous patience in devices training! To everyone at the Boston Foundation for Sight, thank you! You have given us endless possibilities and the chance to grow into productive adults and I hope we will make you proud!
Love, Julie McCawley