Our oldest daughter, Kaitlyn, is 18 years old. She wasn’t diagnosed with Aniridia until she was 4 months old, and that was due to us pushing to find out why her eyes appeared to be different. Shortly after that diagnosis, she did receive genetic testing. We went to a major children’s hospital for testing & consultation. They told us about her deletion and had us tested to see if we were carriers. However, they neglected to tell us that she has WAGR Syndrome. In 1997 the only information we could find online about Aniridia was written for doctors. We knew she had a risk for WAGR but since she was tested and we weren’t informed, we thought she only had Aniridia. Ultrasounds were still ordered every 3 months to watch for Wilm’s Tumor, which she did end up getting when she was 2.5 years old. She lost her left kidney and went on chemotherapy. Flash forward to elementary school. Her 1st grade teacher asked me for help in how to best teach her. I was researching online and found an Aniridia network. When I was talking about Kaitlyn’s test results, I was approached by Kelly Trout who asked me a few more questions and then referred me to our WAGR group. It was Kelly who told me that Kaitlyn does indeed have WAGR Syndrome based on Kaitlyn’s deletion. How my daughter got missed at birth for an Aniridia diagnosis and then 6 months later for her WAGR diagnosis is rather unsettling. She also has Nystagmus, bi-lateral cataracts, glaucoma, and corneal scarring (right eye) from a foreign body that got trapped under her eyelid.
Kaitlyn struggles in school not only with her visual impairments, but with reading comprehension. She reads about 2 years behind her grade level. Her core classes were taught at the resource level. She did graduate on time! Now she is attending the local community college. She wants to be a teacher, either preschool or elementary, sometimes she states she wants to focus on special ed since that’s near & dear to her heart. College will take her either 3 years if she decides on early childhood education, or 5 years if she goes for her K-8 degree.
Her interests include art, crocheting, Facebook, and chatting with friends. During her senior year she took a photography class. Her teacher entered her in the high school conference art show (13 schools) where she won an honorable mention for her photograph (bottom photo in the picture of her with her award) and the judges did not know she is visually impaired! For the last 7 years, she attended Camp Lions for a week each summer. This summer she is too old to go as a camper but will attend as a volunteer. She also volunteers as a crew leader during our church’s week of VBS. She was involved with the church youth group while in high school. Kaitlyn was a Girl Scout from 1st – 12th grade. She sang in the school choir from 5th – 8th grade. During high school she was on the class council, which is different from student council. When she was younger she was a cheerleader for our town’s competitive football team for 2 seasons. She took swim lessons thru a park district that is dedicated to those with special needs.