Go Where the Journey Takes You
Diagnosed with retinitis pigmentosa at age three, Karen adapted to her vision issues very early in life, doing all the things kids enjoy. Her grandfather taught her to ride a bike, swim, and roller skate. She even hoped to drive someday. Life was good.
She knew her vision was worsening, but when she was diagnosed as legally blind at age 15, her world fell apart. "It was hard to work through. I believed I'd be driving at 16, not facing the diagnosis I received,” Karen said.
Over the next 10 years, her vision gradually decreased, and in 2019 she heard about a new gene therapy treatment. Spark Therapeutics had just released Luxturna for testing. Karen, now age 27, met all the criteria to be among the first to receive the treatment. It appeared to be a success. Her vision increased and she could see more color.
In August of 2023, Karen was just finishing her master’s degree in social work and beginning an internship at Bosma when she noticed her vision beginning to fail again. The doctors suggested cataract surgery which left her with only light vision in her right eye, and a little better vision in the left.
Then came the pressure in her eye. She had developed glaucoma due to the gene therapy. Only 1% of the people who went through the Luxturna treatment developed glaucoma. Karen was one.
But, Karen was in the right place at the right time. Her internship at Bosma turned into much more than meeting a requirement for her master’s degree. She could see firsthand the difference Bosma was making.
Karen decided to enter Bosma’s Vocational Rehab program in fall 2023 and her life took an upturn.
“The instructors and counselors at Bosma are so good at meeting you where you are in your journey. They're patient, empathetic, understanding, and intent on providing the tools you need to succeed. In the four months I was in the program, I became proficient on a screen reader, learned Grade 2 Braille, and became comfortable in my kitchen.
“My Orientation and Mobility instructor helped me master the white cane. It’s empowering to know I can navigate my surroundings and be independent.
“I would tell others facing the challenges of blindness to take time to grieve...but not too much time. You can get your independence back. I do things now that I couldn't do before. I love cooking and baking. I have more computer skills than ever, and the white cane gives me the independence I craved,” said Karen.
Currently, Karen is going through Bosma’s Employment Services program, where she receives help with interviewing skills, filling out job applications, and preparing for employment. She is convinced that she wants a career that will enable her to help people face their challenges and live successful, fulfilling lives.
Karen’s loving grandfather and long-time supporter, teacher, coach, and best friend passed last December after years of health issues. But he left her with so much.
“His favorite thing to say to me was, ‘When it’s too tough for everyone else, it’s just right for us.’ I will live by it always.”