A local mom says her son’s cerebral-cortical visual impairment went undiagnosed by experts for years, until she took him to Watertown’s Perkins School for the Blind.
Perkins School for the Blind is working to spread awareness for what it calls a hidden epidemic: Cerebral/Cortical Visual Impairment (CVI).
Senior director of the CVI Center at Perkins, Ilse Willems, says that CVI is very widely underdiagnosed and misunderstood.
“Not all medical providers know about CVI so it might not come up for years,” said Willems. “We have students that were not diagnosed until 18 or 30 or 40.”
Get Boston local news, weather forecasts, lifestyle and entertainment stories to your inbox. Sign up for NBC Boston’s newsletters.
CVI is a brain-based visual impairment where the brain has trouble processing what you’re looking at.
She says that CVI can be different for every student and in just the last few years she has noticed more new students being diagnosed with it.
Zeke Herba is one of those students. Now in the sixth grade, he was born blind, and while doctors told them eye surgery would fix his sight, it wasn't so simple.
Local
In-depth news coverage of the Greater Boston Area.
"He would map a room, kind of run around a room to check out the space, he would hold things close to his eye. He would do light gazing. There seemed to be depth perception issues," explained Zuleida Herba, his mother.
It took them years to get the right diagnosis and get him into the right program at Perkins.
"At one point I even got kicked out of a doctor’s office because the doctor said that’s not a vision issue and dismissed us and moved on, so as you can imagine as a parent I got tired of not having answers," she said.
CVI is the leading cause of childhood blindness, according to Perkins.
Willems says it usually happens when there is damage to the brain at birth.
“Usually, it happens around birth... some kind of asphyxia or a stroke at birth, meningitis,” she said. “It can happen later in life if there is any kind of trauma that happened like any big car accident.”
She said people can have 2020 vision and a perfect MRI and still have CVI, which is why a CVI-specific evaluation can help.
Perkins School for the Blind is holding its third annual Everybody In! Walk/Move for Perkins this Saturday on its campus in Watertown to raise awareness and support for kids with disabilities.
To register to join, click here.
Get updates on what's happening in Boston to your inbox. Sign up for our News Headlines newsletter.
