Life with Progressive Vision Loss: One Family’s Story

Sofia’s parents noticed her vision symptoms at a young age. With the help of their optometrist, they created a new path forward.

Every couple of months, Lindsey Allen gets the same call. On the other line is a new parent who has just heard their child receive a devastating diagnosis – impending and permanent vision loss from a condition called Autosomal Dominant Optic Atrophy (ADOA) – a diagnosis two of her children share.

These calls are just one part of the family’s life since Lindsey’s daughter Sofia was diagnosed with ADOA at 3-years-old, a rare genetic disease that had taken 80% of her vision at the time of diagnosis.

As a toddler, Lindsey and her husband Adam noticed Sofia looking above or to the side of objects in her view instead of directly at them. The couple took her to a number of specialists, and after eventually receiving genetic testing, her diagnosis had a name: ADOA.

ADOA is a rare disease that causes progressive vision loss and usually presents before age 15. Over time, it deteriorates the optic nerve. While the condition impacts every patient differently, Sofia was legally blind before the age of three and impacted in every aspect of her life.

Almost as challenging as processing the difficult news was the loneliness. At the time, there was very little information about the condition or resources for families. Lindsey and Adam decided to change that. They created the ADOA Association, equipped with the resources they wished they had at the time, including a community for questions and support and ultimately a team that would work together to fund research for the cure.

In 2014, the family visited optometrist Dr. Tracy Sepich who was recommended for her specialization in vision rehabilitation. They wanted to know how her condition would impact her now and in the future, a timely concern as she was just starting kindergarten.

Dr. Sepich set up a care plan and immediately began connecting her with the resources she would need. While Sofia could see to a degree, she couldn’t see clearly, and low contrast or detail was difficult. Dr. Sepich wrote recommendations to Sofia’s preschool to keep her in a standard classroom, seated at the front of the class. Her office conducted vision therapy, where Sofia worked with a certified vision therapist once a week for six months. During these sessions, she learned how to use her eyes to their fullest potential, integrating vision with balance and learning to use low vision devices.

“So many kids who have visual impairments think there’s no help out there and we see them years after they’ve already been struggling,” says Dr. Sepich. “Optometry is there to help people navigate through life even when they don’t have 20/20 vision.”

When Lindsey and Adam’s youngest son was recently diagnosed, also at three-years-old, the family knew what to do and took action.

If you’re noticing any potential symptoms of vision loss, get care from an AOA doctor of optometry who can support with low vision therapy and other specialized care.

Dr. Tracy Sepich

Dr. Tracy Sepich earned her Bachelor’s degree in Life Science from Penn State University in 1987, followed by both a Master of Science in Low Vision Rehabilitation and a Doctor of Optometry degree from the Pennsylvania College of Optometry in 1991.

After practicing in Virginia, then Seneca, Pennsylvania, Dr. Sepich established Restore Eye Care and Eye Gym in State College Pennsylvania in 2005. She provides primary eye care as well as optometric vision rehabilitation services. Dr. Sepich has been published in Review of Optometry and has lectured extensively to optometrists, physicians, paraoptometrics, and vision teachers on low vision care. Her practice was also featured in the national trade journal Eyecare Business.

A dedicated volunteer, Dr. Sepich contributes her expertise to programs such as Special Olympics Opening Eyes, Remote Area Medical, InfantSEE, and Vision USA, providing essential vision care to underserved populations.