The Usher Syndrome Foundation

When you first meet Megan, you would never know that she has any difficulty seeing or hearing.  She looks directly at you when in conversation and her speech is perfect.  But after spending some time with her, you begin to notice subtle inconsistencies. Things such as her eyes are always dilated, even in very bright light, and how she often holds onto someone’s arm when walking through a building, or how she uses her hands to feel the edges of objects and walls to get her baring in the environment.  Although Megan’s hearing aids help her tremendously, she still has to concentrate to read others lips in order to understand everything they are saying. Megan was diagnosed with Usher Syndrome in February of 2007, but her difficulties began long before then.  It wasn’t until she was three years old that doctors confirmed that she was moderately deaf, with a hearing loss of about 80%.  At this late stage for speech development, she was quickly enrolled in Central Institute of the Deaf to learn how to read lips and speak articulately with the help of her new hearing aids.  She advanced quickly in the program and mainstreamed into elementary school by the time she was five.

Throughout her years in elementary school and high school, Megan lived her life as normal as most people.  She did well in school, played sports, socialized easily and as other teenagers do got her driver’s license and applied to college.  Having decided at age nine that she wanted to be an architect, Megan pursued her lifelong goal of studying architecture by enrolling at the School of Architecture at the University of Kansas in 2006.

While studying in Kansas, Megan began to notice odd things about her own behavior that she recognized was not common in others, especially when it came to navigating her surroundings.  She found it increasingly difficult to adjust her vision to the dark, and she questioned internally why others seemed to move so easily in dark spaces.  She walked very slowly up and down stairs for fear of tripping and was amazed to see others move quickly and easily as they traversed the steps.  But it was after some close calls while driving that she finally recognized it was time to make an appointment with the eye doctor.

What they eye doctor discovered would change Megan’s world dramatically.  She was told that her difficulties with seeing were likely due to Usher Syndrome, a disorder that causes deafness and blindness, and she would continue to lose her remaining vision until she was completely blind.  Megan was startled to learn how much of her vision was already lost, and devastated by the knowledge that she would one day no longer see at all.

Since this initial diagnosis, Megan has moved back home to St. Louis to be near family and friends and transferred to Washington University in St. Louis to continue her studies in architecture. She will graduate in May, 2010. 

The past few years have been difficult for Megan, but her silent determination and appreciation for the beauty in her life continues to be strong.  She has learned the depth of love and compassion that others have shown for her, and their encouragement and support has been felt with the deepest gratitude.  She has made a decision to continue with her chosen profession and be an architect for as long as her vision holds out. However, when you are forced to watch your own vision fade, time and a cure are of the essence.  In 2008, she and her mother, Theresa Bettlach-Cacciatore, began the Usher Syndrome Foundation to raise funds for research in hopes of a cure for this disorder. With the help of many family members and friends they plan to continue their efforts until an answer is found.