Stephanie Duesing

Stephanie Duesing is the author of "Eyeless Mind: A Memoir About Seeing and Being Seen. In January of 2017, Stephanie discovered that her straight A honor student, genius artist, abd water polo-playing son Sebastian was almost completely blind and no one knew, not even Sebastian himself. He was fifteen and just about to enroll in driver's ed. They were devastated. Terrified for her son's safety, overwhelmed with guilt at not knowing that her own son was blind, and utterly baffled at the impossibility of the situation, they embarked on a journey to find answers.

"Eyeless Mind" is the true story of how an ordinary music teacher made a major medical discovery in the field of visual neuroplasticity. Sebastian is the only person in the world known to process his vision verbally, which means that he sees with words like a bat sees with sound. Dr. Lotfi Merabet, the director of the Harvard CVI Neuroplasticity research study, associate scientist at Massachusetts Eye and Ear, and associate professor of ophthalmology at Harvard Medical School published this paper on Sebastian's verbal mediation to process his vision in collaboration with Dr. Barry Kran, the head of optometrics at the New England Eye Low Vision Clinic at the Perkins School for the Blind.
https://www.sciencedirect.com/science/article/abs/pii/S0028393221002359

Although Sebastian's neuroplastic adaptation to his neurological visual impairment is unique, his actual condition is common and is poorly understood. Cerebral/cortical visual impairment (CVI) was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn't have a diagnostic code. There are tens of thousands of people in the U.S alone who have CVI, and they are struggling to gain access to diagnostic, educational, and habilitative services just as the Duesing family did.

https://www.nei.nih.gov/about/news-and-events/news/vision-loss-children-whose-eyesight-may-be-2020-requires-new-diagnostic-and-teaching-strategies

It is Stephanie's mission to raise awareness about this common, often invisible, and frequently debilitating disability. People who have CVI often go for years un-and misdiagnosed, just as Sebastian did. They are very often misdiagnosed with autism, intellectual disability, and emotional abd behavioral disorders. It's a true public health crisis. Dr. Lotfi Merabet says that "Eyeless Mind" is "a must-read for any family facing the challenges of raising a child with any disability. "

For more beautiful endorsements from the best vision and brain specialists in the world, please see my website

https://stephanieduesing.com/endorsements