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Meet Emmett, a child with CVI

With an estimated 150,000 children in the U.S. impacted, the leading cause of childhood blindness is widely misdiagnosed and misunderstood. To help, Perkins is launching an innovative approach.

Emmett rolls across a bridge, pushed by a staff member

The leading cause of blindness, CVI, or Cortical/Cerebral Visual Impairment, is based in the brain, not in the eyes. Because of this, CVI is frequently misdiagnosed and widely misunderstood. Too many children with CVI are labeled untestable, untreatable and unteachable. This is devastating to these children and their families. And it’s completely unnecessary.

At Perkins, we know there is good news for kids with CVI: If we reach them early, and get them access to trained teachers and the right medical care, kids with CVI can improve the use of their vision, and learn how to access their world.

For children with CVI and their families, the stakes are high. That’s why Perkins created the CVI Center, to bring together educators, medical professionals, researchers, and parents in a united effort to unlock the power of the brain to see.

Together, we will open a whole new world of opportunities for children with the leading cause of blindness.

We are able to be a family now.

Emmett’s mom

Children with CVI see the world as a swirling mass of color, light and movement that is incomprehensible and overwhelming. They frequently shut out the world altogether and avoid interactions, even with their own parents, because it’s so difficult to make sense of their surroundings.

One of these kids is Emmett. As a child, Emmett never recognized his mother. For the first 11 years of his life, his family knew something was wrong but couldn’t get a proper diagnosis. Things as simple as family meal time and trips to the store were too overwhelming for Emmett, and no teachers or family members could help him.

When Emmett was 12, our experts helped his family understand that he had CVI. That kicked off two years of intensive work with Perkins’ specialized teachers. Now, Emmett can participate in family meals, make those trips to the store and finally recognize his mother.

“We are able to be a family now,” she says.

To learn more about CVI, visit Perkins’ hub for resources, stories, and more at CVINow.org.

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